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• Ethical Considerations in Research | Types & Examples

Ethical Considerations in Research | Types & Examples

Published on October 18, 2021 by Pritha Bhandari . Revised on May 9, 2024.

Ethical considerations in research are a set of principles that guide your research designs and practices. Scientists and researchers must always adhere to a certain code of conduct when collecting data from people.

The goals of human research often include understanding real-life phenomena, studying effective treatments, investigating behaviors, and improving lives in other ways. What you decide to research and how you conduct that research involve key ethical considerations.

These considerations work to

• protect the rights of research participants
• enhance research validity
• maintain scientific or academic integrity

Table of contents

Why do research ethics matter, getting ethical approval for your study, types of ethical issues, voluntary participation, informed consent, confidentiality, potential for harm, results communication, examples of ethical failures, other interesting articles, frequently asked questions about research ethics.

Research ethics matter for scientific integrity, human rights and dignity, and collaboration between science and society. These principles make sure that participation in studies is voluntary, informed, and safe for research subjects.

You’ll balance pursuing important research objectives with using ethical research methods and procedures. It’s always necessary to prevent permanent or excessive harm to participants, whether inadvertent or not.

Defying research ethics will also lower the credibility of your research because it’s hard for others to trust your data if your methods are morally questionable.

Even if a research idea is valuable to society, it doesn’t justify violating the human rights or dignity of your study participants.

Prevent plagiarism. Run a free check.

Before you start any study involving data collection with people, you’ll submit your research proposal to an institutional review board (IRB) .

An IRB is a committee that checks whether your research aims and research design are ethically acceptable and follow your institution’s code of conduct. They check that your research materials and procedures are up to code.

If successful, you’ll receive IRB approval, and you can begin collecting data according to the approved procedures. If you want to make any changes to your procedures or materials, you’ll need to submit a modification application to the IRB for approval.

If unsuccessful, you may be asked to re-submit with modifications or your research proposal may receive a rejection. To get IRB approval, it’s important to explicitly note how you’ll tackle each of the ethical issues that may arise in your study.

There are several ethical issues you should always pay attention to in your research design, and these issues can overlap with each other.

You’ll usually outline ways you’ll deal with each issue in your research proposal if you plan to collect data from participants.

Voluntary participation means that all research subjects are free to choose to participate without any pressure or coercion.

All participants are able to withdraw from, or leave, the study at any point without feeling an obligation to continue. Your participants don’t need to provide a reason for leaving the study.

It’s important to make it clear to participants that there are no negative consequences or repercussions to their refusal to participate. After all, they’re taking the time to help you in the research process , so you should respect their decisions without trying to change their minds.

Voluntary participation is an ethical principle protected by international law and many scientific codes of conduct.

Take special care to ensure there’s no pressure on participants when you’re working with vulnerable groups of people who may find it hard to stop the study even when they want to.

Informed consent refers to a situation in which all potential participants receive and understand all the information they need to decide whether they want to participate. This includes information about the study’s benefits, risks, funding, and institutional approval.

You make sure to provide all potential participants with all the relevant information about

• what the study is about
• the risks and benefits of taking part
• how long the study will take
• your supervisor’s contact information and the institution’s approval number

Usually, you’ll provide participants with a text for them to read and ask them if they have any questions. If they agree to participate, they can sign or initial the consent form. Note that this may not be sufficient for informed consent when you work with particularly vulnerable groups of people.

If you’re collecting data from people with low literacy, make sure to verbally explain the consent form to them before they agree to participate.

For participants with very limited English proficiency, you should always translate the study materials or work with an interpreter so they have all the information in their first language.

In research with children, you’ll often need informed permission for their participation from their parents or guardians. Although children cannot give informed consent, it’s best to also ask for their assent (agreement) to participate, depending on their age and maturity level.

Anonymity means that you don’t know who the participants are and you can’t link any individual participant to their data.

You can only guarantee anonymity by not collecting any personally identifying information—for example, names, phone numbers, email addresses, IP addresses, physical characteristics, photos, and videos.

In many cases, it may be impossible to truly anonymize data collection . For example, data collected in person or by phone cannot be considered fully anonymous because some personal identifiers (demographic information or phone numbers) are impossible to hide.

You’ll also need to collect some identifying information if you give your participants the option to withdraw their data at a later stage.

Data pseudonymization is an alternative method where you replace identifying information about participants with pseudonymous, or fake, identifiers. The data can still be linked to participants but it’s harder to do so because you separate personal information from the study data.

Confidentiality means that you know who the participants are, but you remove all identifying information from your report.

All participants have a right to privacy, so you should protect their personal data for as long as you store or use it. Even when you can’t collect data anonymously, you should secure confidentiality whenever you can.

Some research designs aren’t conducive to confidentiality, but it’s important to make all attempts and inform participants of the risks involved.

As a researcher, you have to consider all possible sources of harm to participants. Harm can come in many different forms.

• Psychological harm: Sensitive questions or tasks may trigger negative emotions such as shame or anxiety.
• Social harm: Participation can involve social risks, public embarrassment, or stigma.
• Physical harm: Pain or injury can result from the study procedures.
• Legal harm: Reporting sensitive data could lead to legal risks or a breach of privacy.

It’s best to consider every possible source of harm in your study as well as concrete ways to mitigate them. Involve your supervisor to discuss steps for harm reduction.

Make sure to disclose all possible risks of harm to participants before the study to get informed consent. If there is a risk of harm, prepare to provide participants with resources or counseling or medical services if needed.

Some of these questions may bring up negative emotions, so you inform participants about the sensitive nature of the survey and assure them that their responses will be confidential.

The way you communicate your research results can sometimes involve ethical issues. Good science communication is honest, reliable, and credible. It’s best to make your results as transparent as possible.

Take steps to actively avoid plagiarism and research misconduct wherever possible.

Plagiarism means submitting others’ works as your own. Although it can be unintentional, copying someone else’s work without proper credit amounts to stealing. It’s an ethical problem in research communication because you may benefit by harming other researchers.

Self-plagiarism is when you republish or re-submit parts of your own papers or reports without properly citing your original work.

This is problematic because you may benefit from presenting your ideas as new and original even though they’ve already been published elsewhere in the past. You may also be infringing on your previous publisher’s copyright, violating an ethical code, or wasting time and resources by doing so.

In extreme cases of self-plagiarism, entire datasets or papers are sometimes duplicated. These are major ethical violations because they can skew research findings if taken as original data.

You notice that two published studies have similar characteristics even though they are from different years. Their sample sizes, locations, treatments, and results are highly similar, and the studies share one author in common.

Research misconduct

Research misconduct means making up or falsifying data, manipulating data analyses, or misrepresenting results in research reports. It’s a form of academic fraud.

These actions are committed intentionally and can have serious consequences; research misconduct is not a simple mistake or a point of disagreement about data analyses.

Research misconduct is a serious ethical issue because it can undermine academic integrity and institutional credibility. It leads to a waste of funding and resources that could have been used for alternative research.

Later investigations revealed that they fabricated and manipulated their data to show a nonexistent link between vaccines and autism. Wakefield also neglected to disclose important conflicts of interest, and his medical license was taken away.

This fraudulent work sparked vaccine hesitancy among parents and caregivers. The rate of MMR vaccinations in children fell sharply, and measles outbreaks became more common due to a lack of herd immunity.

Research scandals with ethical failures are littered throughout history, but some took place not that long ago.

Some scientists in positions of power have historically mistreated or even abused research participants to investigate research problems at any cost. These participants were prisoners, under their care, or otherwise trusted them to treat them with dignity.

To demonstrate the importance of research ethics, we’ll briefly review two research studies that violated human rights in modern history.

These experiments were inhumane and resulted in trauma, permanent disabilities, or death in many cases.

After some Nazi doctors were put on trial for their crimes, the Nuremberg Code of research ethics for human experimentation was developed in 1947 to establish a new standard for human experimentation in medical research.

In reality, the actual goal was to study the effects of the disease when left untreated, and the researchers never informed participants about their diagnoses or the research aims.

Although participants experienced severe health problems, including blindness and other complications, the researchers only pretended to provide medical care.

When treatment became possible in 1943, 11 years after the study began, none of the participants were offered it, despite their health conditions and high risk of death.

Ethical failures like these resulted in severe harm to participants, wasted resources, and lower trust in science and scientists. This is why all research institutions have strict ethical guidelines for performing research.

If you want to know more about statistics , methodology , or research bias , make sure to check out some of our other articles with explanations and examples.

• Normal distribution
• Measures of central tendency
• Chi square tests
• Confidence interval
• Quartiles & Quantiles
• Cluster sampling
• Stratified sampling
• Thematic analysis
• Cohort study
• Peer review
• Ethnography

Research bias

• Implicit bias
• Cognitive bias
• Conformity bias
• Hawthorne effect
• Availability heuristic
• Attrition bias
• Social desirability bias

Ethical considerations in research are a set of principles that guide your research designs and practices. These principles include voluntary participation, informed consent, anonymity, confidentiality, potential for harm, and results communication.

Scientists and researchers must always adhere to a certain code of conduct when collecting data from others .

These considerations protect the rights of research participants, enhance research validity , and maintain scientific integrity.

Research ethics matter for scientific integrity, human rights and dignity, and collaboration between science and society. These principles make sure that participation in studies is voluntary, informed, and safe.

Anonymity means you don’t know who the participants are, while confidentiality means you know who they are but remove identifying information from your research report. Both are important ethical considerations .

You can only guarantee anonymity by not collecting any personally identifying information—for example, names, phone numbers, email addresses, IP addresses, physical characteristics, photos, or videos.

You can keep data confidential by using aggregate information in your research report, so that you only refer to groups of participants rather than individuals.

These actions are committed intentionally and can have serious consequences; research misconduct is not a simple mistake or a point of disagreement but a serious ethical failure.

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Research Ethics

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• Description
• Aims and Scope
• Editorial Board
• Abstracting / Indexing
• Submission Guidelines

Research Ethics provides a platform for sharing experiences and analysis of ethical issues that are related to the design, conduct, impact and oversight of research. Through open and transparent narrative and analysis of ethical issues in research, it serves to raise awareness, challenge assumptions and help find solutions for complex ethical issues.

Ethical issues are not limited to a specific discipline or type of research. The Editors welcome submissions from any research field (for instance, biomedical, social science, environmental, information technology, or the arts) and a broad range of methodological approaches (for instance, clinical trials, animal experimentation, qualitative studies, laboratory or desk-based research).

Some examples of the topics addressed in Research Ethics include:

• Ethical issues related to the inclusion of vulnerable populations in research
• Ethics dumping
• Benefit sharing
• Ethical issues related to social media research
• Research integrity and research misconduct
• The education and training of researchers and ethics reviewers
• The development and implementation of governance mechanisms

In addition to these applied ethics issues, the journal also welcomes original theoretical papers that contribute to the debate around the normative underpinnings or ethical frameworks for research ethics.

Research Ethics publishes original papers and review articles as well as informative case studies and offers a home for submissions from authors from around the world. The quality of submitted articles is evaluated independently by double-blind peer review. This journal is a member of the Committee on Publication Ethics (COPE).

Research Ethics is aimed at readers and authors who are interested in ethical issues associated with the design and conduct of research, the regulation of research, the procedures and process of ethical review and issues related to scientific integrity. The journal aims to promote, inspire, host and engage in open and public debate about research ethics on an international scale and to contribute to the education of researchers and reviewers of research.

Research Ethics offers a home for submissions from authors from around the world and publishes original papers and review articles as well as informative case studies. The quality of submitted articles is evaluated independently by double-blind peer review.

• Clarivate Analytics: Emerging Sources Citation Index (ESCI)
• Directory of Open Access Journals (DOAJ)
• ERIC (Education Resources Information Center)

Manuscript Submission Guidelines: Research Ethics

This Journal is a member of the Committee on Publication Ethics .

Please read the guidelines below then visit the Journal’s submission site  http://mc.manuscriptcentral.com/rea  to upload your manuscript. Please note that manuscripts not conforming to these guidelines may be returned.

Only manuscripts of sufficient quality that meet the aims and scope of  Research Ethics  will be reviewed.

All articles published in Research Ethics are published fully open access under a Creative Commons licence and available worldwide, with readers having barrier-free access to the full-text articles immediately upon publication. From 1st January 2024, an article processing charge (APC) is levied on all article types that are published in the journal.

For authors that are currently eligible for an  Open Access Agreement at your institution with Sage , your article will be published at either no direct cost to you or at a deeply discounted rate, depending on the terms of the agreement.

Authors based at institutions in developing countries may also be eligible for an APC waiver, please see our  website page on Gold Open Access Article Processing Charge Waivers  for further information. Please refer to  our page regarding our partnerships around the world  if you would like to know more about the Research4Life initiative.

For authors not eligible for a Sage Open Access Agreement, the APC is USD $500.

• Open Access
• Article processing charge (APC)
• What do we publish? 3.1 Aims & Scope 3.2 Article types 3.3 Writing your paper
• Editorial policies 4.1 Peer review policy 4.2 Authorship 4.3 Acknowledgements 4.4 Declaration of conflicting interests 4.5 Research ethics and patient consent 4.6 Clinical trials
• Publishing policies 5.1 Publication ethics 5.2 Contributor's publishing agreement
• Preparing your manuscript 6.1 Main File 6.2 Title Page 6.3 Formatting 6.4 Language 6.5 Artwork, figures and other graphics 6.6 Supplementary material 6.7 Reference style 6.8 English language editing services
• Submitting your manuscript 7.1 ORCID 7.2 Title, keywords and abstracts 7.3  Information required for completing your submission 7.4  Permissions
• On acceptance and publication 8.1 Sage Production 8.2 Online publication 8.3  Promoting your article
• Further information

1. Open Access

Research Ethics is an open access, peer-reviewed journal. Each article accepted by peer review is made freely available online immediately upon publication, is published under a Creative Commons license and will be hosted online in perpetuity. 

For general information on open access at Sage please visit the Open Access page or view our Open Access FAQs.

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2. Article processing charge (APC)

For authors not eligible for a Sage Open Access Agreement, the article processing charge (APC) is USD $500.

3. What do we publish?

3.1 Aims & Scope

Before submitting your manuscript to Research Ethics , please ensure you have read the  Aims & Scope .

3.2 Article Types

Research Ethics  publishes original articles and review articles as well as informative case studies on the ethical issues associated with the design and conduct of research, the regulation of research, the procedures and process of ethical review, and issues related to scientific integrity. The journal encourages the submission of the following types of manuscripts:

• Original articles: these manuscripts present original empirical content and/or an original theoretical perspective. Submissions that present original empirical content should not exceed 12,000 words (including references). Submissions that present an original theoretical perspective should not exceed 6,000 words (including references). Longer manuscripts may occasionally be considered at the discretion of the Editors.
• Topic Pieces: these articles are intended to form a snapshot of, or perspective on, contemporary thinking on a topic or issue in research ethics or research integrity. Submissions of topic pieces should be no longer than 2,000 words (including references). 
• Case studies: these articles provide examples of real-world ethical challenges in research or research ethics review, as well as real-world case studies in research integrity or research misconduct. Case studies should include ethics analysis of the identified challenges and, where possible, recommendations for dealing with them. Submissions of case studies should be no longer than 3,000 words (including references).
• Review articles: these articles address key issues in research ethics or integrity with a focus on under-researched topics. Rather than introducing new material, review articles offer critical analysis of specific issues in particular areas with significant referencing to existing published literature. Review articles should be between 3,000 and 6,000 words (including references).

3.3 Writing your paper

The Sage Author Gateway has some general advice and on  how to get published , plus links to further resources. Sage Author Services also offers authors a variety of ways to improve and enhance their article including English language editing, plagiarism detection, and video abstract and infographic preparation.

3.3.1 Make your article discoverable

When writing up your paper, think about how you can make it discoverable. The title, keywords and abstract are key to ensuring readers find your article through search engines such as Google. For information and guidance on how best to title your article, write your abstract and select your keywords, have a look at this page on the Gateway: How to Help Readers Find Your Article Online .

4. Editorial policies

4 .1 Peer review policy

Manuscripts submitted for publication in Research Ethics are subject to anonymised peer review.

Submissions are initially reviewed by the editors, who determine whether the submission meets the basic guidelines (e.g. addresses a topic relevant to research ethics or research integrity, is written in English, and is sufficiently understandable). If so, the editors will consult among themselves to determine if the submission, based on its quality, should go on to peer review. Submissions passing this first level of review will be assigned to at least two peer reviewers with the appropriate expertise. The reviewers assess submissions based on scholarly quality, relevance, timeliness, novelty, importance, engagement with the relevant literature, and similar factors. Upon receipt of the peer review responses, the editors will decide whether the manuscript should be rejected, or accepted with or without required revisions.

Research Ethics operates a strictly fully anonymous peer review process in which the reviewer’s name is withheld from the author and, the author’s name from the reviewer. The reviewer may at their own discretion opt to reveal their name to the author in their review, but our standard policy practice is for both identities to remain concealed. The desired turnaround time for manuscripts is a maximum of eight weeks from submission to initial decision. If the manuscript is accepted for publication, the editors reserve the right to make minor adjustments (e.g. grammar, tone) and, if necessary, to shorten the manuscript without changing the meaning.

4.2 Authorship

All parties who have made a substantive contribution to the manuscript should be listed as authors. Principal authorship, authorship order, and other publication credits should be based on the relative scientific or professional contributions of the individuals involved, regardless of their status. A student is usually listed as principal author on any multiple-authored publication that substantially derives from the student’s dissertation or thesis. See also the COPE discussion document on authorship, available here .

Please note that AI chatbots and Large Language Models (LLMs), such as ChatGPT, do not currently satisfy our authorship criteria. Use of any AI chatbot or LLM in helping prepare a manuscript for submission should be clearly indicated in the manuscript, including which model was used and for what purpose. Please use the methods or acknowledgements section, as appropriate. For more information see the  Sage policy on Use of ChatGPT and Generative AI .

4.3 Acknowledgements

Contributors or advisors who do not meet the criteria for authorship can be listed in an Acknowledgements section. Examples of those who might be acknowledged include a person who provided purely technical help, general support or feedback on an early draft. Please ensure that persons who are acknowledged have given permission for mention in the article and upload their confirmation (as supplementary materials) at submission.

4.3.1 Third party submissions

Where an individual who is not listed as an author submits a manuscript on behalf of the author(s), a statement must be included in the Acknowledgements section of the manuscript and in the accompanying cover letter. The statements must:

• Disclose this type of editorial assistance – including the individual’s name, company and level of input
• Identify any entities that paid for this assistance
• Confirm that the listed authors have authorized the submission of their manuscript via third party and approved any statements or declarations, e.g. conflicting interests, funding, etc.

Where appropriate, Sage reserves the right to deny consideration to manuscripts submitted by a third party rather than by the authors themselves .

4.3.2 Writing assistance

Individuals who provided writing assistance, e.g. from a specialist communications company, do not qualify as authors and so should only be included in the Acknowledgements section. Authors must disclose any writing assistance – including the individual’s name, company and level of input – and identify the entity that paid for this assistance.

It is not necessary to disclose use of language polishing services.

4.4 Declaration of conflicting interests

It is the policy of Research Ethics to require a declaration of conflicting interests from all authors enabling a statement to be carried within the paginated pages of all published articles.

The declaration of conflicting interests must be provided at the submission stage in two ways:

• Authors should provide a full statement disclosing the existence of any financial or non-financial interest within the title page and/or cover letter, which is not sent to reviewers, to detail these and to declare any potential conflicts of interest to the editor.
• Authors should provide a minimal statement (either "The authors declare the existence of a financial/non-financial competing interest" OR "The authors declare no competing interests") within the anonymised manuscript. The minimal statement will be shared with peer-reviewers and must not include any information which may enable the disclosure of author identities.

In addition to any declarations in the submission system, all authors are required to include a ‘Declaration of Conflicting Interests’ statement at the end of their published article using one of the following standard sentences:

• The authors declare the following competing interests.
• The authors declare no competing interests.

For guidance on conflict of interest statements, please see Sage’s Publishing Policies and the ICMJE recommendations here .

4.5 Research ethics and patient approvals

It is the policy of Research Ethics to require a declaration about research ethics approval enabling a statement to be carried within the paginated pages of all published articles. To ensure anonymous peer-review, please include these details on the title page of your submission. This should include the name of the ethics committee that approved the study and, where possible, the date of approval and reference number of the application.

Should research ethics approval not be relevant/required for your study/article, please include a statement to this effect at the submission stage, along with any accompanying evidence if possible (e.g. relevant link to policy position of institution or legal framework clarifying ethics approval is not required or expected for the kind of study/article being submitted). The following standard sentence can be used:

• The authors declare that research ethics approval was not required for this study.

4.5.1 Medical research

Medical research involving human participants or data must be conducted according to the World Medical Association Declaration of Helsinki .

Submitted manuscripts should conform to the ICMJE Recommendations for the Conduct, Reporting, Editing, and Publication of Scholarly Work in Medical Journals , and all articles reporting on studies involving human participants must state that the relevant ethics committee provided ethics approval (or waived its requirement). Please ensure that you have provided the full name and institution of the ethics committee, in addition to the approval number and date of approval. Please include these details on the title page of your submission. For research articles, authors are also required to state in the methods section whether participants provided informed consent and whether the consent was written or verbal.

Information on informed consent to report on individual cases or case series should be included in the manuscript text. A statement is required regarding whether written informed consent for patient information and images to be published was provided by the participant(s) or a legally authorized representative.

Please also refer to the ICMJE Recommendations for the Protection of Research Participants

 4.5.2 Non-medical research involving humans and human data

All manuscripts reporting studies with humans or human data, including studies that involve primary collection of personal data such as surveys or interviews, must state the relevant ethics committee provided (or waived) approval.

If ethics approval was obtained, please provide the name(s) of the ethics committee(s)/IRB(s) plus the approval number(s)/ID(s). If the study received exemption from ethics approval, please provide the name(s) of the ethics committee(s)/IRB(s) or other authorized body and the reason for exemption. If ethics approval was not sought for the present study, please specify why it was not required and cite the relevant guidelines or legislation where applicable, for the benefit of an international readership. Please include these details on the title page of your submission.

For empirical research articles, authors are also required to state in the methods section whether participants provided informed consent and whether the consent was written or verbal.

If you are unsure whether ethics approval is required for your study, please refer to this Editorial .

4.5.3 Animal studies

All manuscripts reporting on studies with animals must provide details of the relevant research ethics approval (or waiver). Please include these details on the title page of your submission.

4.6 Clinical trials

Many Sage journals conform to the  ICMJE requirement  that clinical trials are registered in a WHO-approved public trials registry at or before the time of first patient enrolment as a condition of consideration for publication. The trial registry name and URL, and registration number must be included at the end of the abstract.

Further to the above, other Sage journals may consider retrospectively registered trials if the justification for late registration is acceptable, consistent with the  AllTrials campaign . The trial registry name and URL, and registration number must be included at the end of the abstract.

5. Publishing Policies

5.1 Publication ethics

Sage is committed to upholding the integrity of the academic record. We encourage authors to refer to the Committee on Publication Ethics’ International Standards for Authors and view the Publication Ethics page on the Sage Author Gateway .

5.1.1 Plagiarism

Research Ethics and Sage take issues of copyright infringement, plagiarism or other breaches of best practice in publication very seriously. We seek to protect the rights of our authors and we always investigate claims of plagiarism or misuse of published articles. Equally, we seek to protect the reputation of the journal against malpractice. Submitted articles may be checked with duplication-checking software. Where an article, for example, is found to have plagiarised other work or included third-party copyright material without permission or with insufficient acknowledgement, or where the authorship of the article is contested, we reserve the right to take action including, but not limited to: publishing an erratum or corrigendum (correction); retracting the article; taking up the matter with the head of department or dean of the author's institution and/or relevant academic bodies or societies; or taking appropriate legal action.

5.1.2 Prior publication

If material has been previously published it is not generally acceptable for publication in a Sage journal. However, there are certain circumstances where previously published material can be considered for publication. Please refer to the guidance on the Sage Author Gateway or if in doubt, contact the Editor at the address given below.

5.2 Contributor's publishing agreement

Before publication Sage requires the author as the rights holder to sign a Journal Contributor’s Publishing Agreement. Research Ethics publishes manuscripts under Creative Commons licenses . The standard license for the journal is Creative Commons by Attribution Non-Commercial (CC BY-NC), which allows others to re-use the work without permission as long as the work is properly referenced and the use is non-commercial. For more information, you are advised to visit Sage's OA licenses page .

Alternative license arrangements are available, for example, to meet particular funder mandates, made at the author’s request.

6. Preparing your manuscript for submission

You will be asked to upload your anonymised manuscript separately from a title page. Please take note of the requirements for preparation for each of these documents.

6.1 Main file

Your main file is your anonymised manuscript. Please ensure that you do not include any identifiable information in your main manuscript. It will consist of the body of your work plus references. You do not need to include the title or abstract as these will be added during the submission process.

6.2 Title page

Separate from your anonymised manuscript (main file), please also include a separate title page with the following information:

• Name of all the authors with institutional affiliations and contact details
• Ethics approval information
• Conflict of interest information
• Funding information
• Acknowledgements

6.3 Formatting

The preferred format for your manuscript is Word. Files should be submitted in a .doc or .docx file format. Word templates are available on the Manuscript Submission Guidelines page of our Author Gateway. It is preferable that all submissions be typed in sans serif font (e.g. Calibri, Helvetica). Double-spacing is also preferred. Keep formatting simple, and avoid unnecessary advanced word processing features, justification, linked objects, or creating your own symbols.

6.4 Language

All manuscripts must be written in English.

6.4.1 Terminology

Please note that at Research Ethics we actively discourage use of the term ‘research subjects’ when referring to studies that involve human participants. The word ‘subjects’ should only be used when referring to the processing of data (as in ‘data subjects’). As an alternative, please use: humans, persons, participants, research participants or human participants.

6.5 Artwork, figures and other graphics

For guidance on the preparation of illustrations, pictures and graphs in electronic format, please visit Sage’s Manuscript Submission Guidelines .

Figures supplied in colour will appear in colour online.

6.6 Supplementary material

This journal is able to host additional materials online (e.g. datasets, podcasts, videos, images etc) alongside the full-text of the article. For more information please refer to our guidelines on submitting supplementary files .

6.7 Reference style

Research Ethics adheres to the Sage Harvard reference style. View the Sage Harvard guidelines to ensure your manuscript conforms to this reference style.

If you use EndNote to manage references, you can download the Sage Harvard EndNote output file .

6.8 English language editing services

Authors seeking assistance with English language editing, translation, or figure and manuscript formatting to fit the journal’s specifications should consider using Sage Language Services. Visit Sage Language Services on our Journal Author Gateway for further information.

7. Submitting your manuscript

Research Ethics is hosted on Sage Track, a web based online submission and peer review system powered by ScholarOne™ Manuscripts. Visit http://mc.manuscriptcentral.com/rea to login and submit your article online.

IMPORTANT: Please check whether you already have an account in the system before trying to create a new one. If you have reviewed or authored for the journal in the past year it is likely that you will have had an account created.  For further guidance on submitting your manuscript online please visit ScholarOne Online Help .

As part of our commitment to ensuring an ethical, transparent and fair peer review process Sage is a supporting member of ORCID, the Open Researcher and Contributor ID . ORCID provides a unique and persistent digital identifier that distinguishes researchers from every other researcher, even those who share the same name, and, through integration in key research workflows such as manuscript and grant submission, supports automated linkages between researchers and their professional activities, ensuring that their work is recognized. 

The collection of ORCID iDs from corresponding authors is now part of the submission process of this journal. If you already have an ORCID iD you will be asked to associate that to your submission during the online submission process. We also strongly encourage all co-authors to link their ORCID iD to their accounts in our online peer review platforms. It takes seconds to do: click the link when prompted, sign into your ORCID account and our systems are automatically updated. Your ORCID iD will become part of your accepted publication’s metadata, making your work attributable to you and only you. Your ORCID iD is published with your article so that fellow researchers reading your work can link to your ORCID profile, and from there link to your other publications.

If you do not already have an ORCID iD please follow this link to create one or visit our ORCID homepage to learn more.

7.2 Title, keywords and abstracts

Please supply a title, an abstract and keywords to accompany your manuscript. The title, keywords and abstract are key to ensuring readers find your article online through online search engines such as Google. Please refer to the information and guidance on how best to title your article, write your abstract and select your keywords by visiting the Sage Journal Author Gateway for guidelines on How to Help Readers Find Your Article Online.

All manuscripts should include up to 6 keywords (in alphabetical order) and an abstract of up to 250 words, which is a condensation of the manuscript that contains a statement of purpose, a description of the content, argument, or analysis, and a concise summary of conclusions.

7.3 Co-authors

You will be asked to provide contact details and affiliations for all co-authors via the submission system and identify who is to be the corresponding author. These details must match what appears on your manuscript.

7.3.1. Ethics approval documentation during manuscript submission

As noted above, for all studies requiring ethics approval, evidence of research ethics approval must be uploaded with your manuscript files during the submission stage. This must show (as a minimum) the name of the ethics committee, the name of the study, the name of the applicant, the ethics approval number/ID, and the date of approval. If an ethics waiver was obtained, please upload evidence of the waiver to include the reason for the waiver.

In your anonymised main manuscript file, please also include a statement (under a Methods section or a separate section on Ethics Approval) whether your study received ethics approval or a waiver, but ensure that any information that could identify the specific institution or committee that provided the approval or waiver is also anonymised, e.g. “This study received ethics approval from [anonymised] on 10 October 2023."

7.4 Permissions

Please also ensure that you have obtained any necessary permission from copyright holders for reproducing any illustrations, tables, figures or lengthy quotations previously published elsewhere. For further information including guidance on fair dealing for criticism and review, please see the Copyright and Permissions page on the Sage Author Gateway .

8. On acceptance and publication

8.1 Sage Production

If your article is accepted, your Sage Production Editor will keep you informed as to your article’s progress throughout the production process. Proofs will be sent by PDF to the corresponding author and should be returned promptly. Authors are reminded to check their proofs carefully to confirm that all author information, including names, affiliations, sequence and contact details are correct, and that Funding and Conflict of Interest statements, if any, are accurate. Please note that if there are any changes to the author list at this stage all authors will be required to complete and sign a form authorising the change.

8.2 Online publication

One of the many benefits of publishing your research in an open access journal is the speed to publication. Your article will be published online in a fully citable form with a DOI number as soon as it has completed the production process. At this time it will be completely free to view and download for all.

8.3 Promoting your article

Publication is not the end of the process! You can help disseminate your paper and ensure it is as widely read and cited as possible. The Sage Author Gateway has numerous resources to help you promote your work. Visit the Promote Your Article  page on the Gateway for tips and advice. 

9. Further information

Any correspondence, queries or additional requests for information on the manuscript submission process should be sent to the Research Ethics editorial office as follows:

The Editors, Research Ethics, [email protected]

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Research Methods

• Introduction
• Key Resources
• Books, Articles & Videos

What is Research Ethics?

Research misconducts, responsible conduct of research, youtube video.

• Methods by Subject
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Research ethics provides guidelines for the responsible conduct of research. In addition, it educates and monitors scientists conducting research to ensure a high ethical standard. The following is a general summary of some ethical principles:

Honestly report data, results, methods and procedures, and publication status. Do not fabricate, falsify, or misrepresent data.

Objectivity:

Strive to avoid bias in experimental design, data analysis, data interpretation, peer review, personnel decisions, grant writing, expert testimony, and other aspects of research.

Keep your promises and agreements; act with sincerity; strive for consistency of thought and action.

Carefulness:

Avoid careless errors and negligence; carefully and critically examine your own work and the work of your peers. Keep good records of research activities.

Share data, results, ideas, tools, resources. Be open to criticism and new ideas.

Respect for Intellectual Property:

Honor patents, copyrights, and other forms of intellectual property. Do not use unpublished data, methods, or results without permission. Give credit where credit is due. Never plagiarize.

Confidentiality:

Protect confidential communications, such as papers or grants submitted for publication, personnel records, trade or military secrets, and patient records.

Responsible Publication:

Publish in order to advance research and scholarship, not to advance just your own career. Avoid wasteful and duplicative publication.

Responsible Mentoring:

Help to educate, mentor, and advise students. Promote their welfare and allow them to make their own decisions.

Respect for Colleagues:

Respect your colleagues and treat them fairly.

Social Responsibility:

Strive to promote social good and prevent or mitigate social harms through research, public education, and advocacy.

Non-Discrimination:

Avoid discrimination against colleagues or students on the basis of sex, race, ethnicity, or other factors that are not related to their scientific competence and integrity.

Competence:

Maintain and improve your own professional competence and expertise through lifelong education and learning; take steps to promote competence in science as a whole.

Know and obey relevant laws and institutional and governmental policies.

Animal Care:

Show proper respect and care for animals when using them in research. Do not conduct unnecessary or poorly designed animal experiments.

Human Subjects Protection:

When conducting research on human subjects, minimize harms and risks and maximize benefits; respect human dignity, privacy, and autonomy.

Source: What is Ethics in Research & Why is it Important?  U.S. National Institute of Environmental Health Sciences

• Five Principles for Research Ethics (American Psychological Association)
• Ethical Guidelines for Good Research Practice  (Association of Social Anthropologists, UK)
• Australian Code for the Responsible Conduct of Research, 2018 (Australian Government)
• ESRC Framework for Research Ethics 2015  (The Economic and Social Research Council, UK)

How different aspects of your research relate to the six ethics principles set out in the ESRC Framework for Research Ethics? Click the image below to find out.

http://www.ethicsguidebook.ac.uk/EthicsPrinciples

What are research misconducts?

(a) Fabrication - making up data or results and recording or reporting them.

(b) Falsification - manipulating research materials, or changing or omitting data or results such that the research is not accurately represented in the research record.

(c) Plagiarism - the appropriation of another person's ideas, processes, results, or words without giving appropriate credit.

(d) Research misconduct does not include honest error or differences of opinion.

Source: Definition of Research Misconduct The Office of Research Integrity, U.S. Department of Health & Human Services

ORI Introduction to the Responsible Conduct of Research

Yale School of Medicine Professor Robert Levine spoke on guidelines for human subjects protection.

Video from: https://www.youtube.com/watch?v=jD-YCDE_5yw

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Peer-reviewed

Research Article

Research ethics and collaborative research in health and social care: Analysis of UK research ethics policies, scoping review of the literature, and focus group study

Roles Conceptualization, Data curation, Formal analysis, Methodology, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliation Department of Health Policy and Department of Social Policy, Care Policy and Evaluation Centre, London School of Economics and Political Science, London, United Kingdom

Roles Conceptualization, Methodology, Supervision, Validation, Writing – review & editing

Affiliation Faculty of Health Studies, Jan Oyebode, Centre for Applied Dementia Studies, University of Bradford, Bradford, United Kingdom

• Chiara De Poli, 
• Jan Oyebode

• Published: December 22, 2023
• https://doi.org/10.1371/journal.pone.0296223
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Current research ethics frameworks were developed on the footprint of biomedical, experimental research and present several pitfalls when applied to non-experimental social sciences. This work explores how the normative principles underpinning policy and regulatory frameworks of research ethics and the related operational processes work in practice in the context of collaborative health and social care research. The work was organised in three phases. First, UK research ethics policy documents were analysed thematically, with themes further organised under the categories of ‘Principles’ and ‘Processes’. Next, we conducted a scoping review of articles about research ethics in the context of collaborative health and social care research, published in English between 2010 and 2022. We then held an exploratory focus group with ten academic researchers with relevant experience to gather their views on how the research ethics system works in practice in England (UK). The thematic framework developed in the first phase supported the analysis of the articles included in the scoping review and of focus group data. The analysis of policy documents identified twelve themes. All were associated to both a principle and a related operational process. The scoping review identified 31 articles. Across these, some themes were barely acknowledged (e.g., Compliance with legislation). Other themes were extensively covered (e.g., The working of Research Ethics Committees), often to discuss issues and limitations in how, in practice, the research ethics system and its processes deal with collaborative research and to suggest options for improvement. Focus group data were largely consistent with the findings of the scoping review. This work provides evidence of the poor alignment between how the research ethics system is normatively expected to work and how it works in practice and offers options that could make research ethics more fit for purpose when addressing collaborative research in health and social care.

Citation: De Poli C, Oyebode J (2023) Research ethics and collaborative research in health and social care: Analysis of UK research ethics policies, scoping review of the literature, and focus group study. PLoS ONE 18(12): e0296223. https://doi.org/10.1371/journal.pone.0296223

Editor: Alberto Molina Pérez, Spanish National Research Council: Consejo Superior de Investigaciones Cientificas, SPAIN

Received: August 7, 2023; Accepted: December 7, 2023; Published: December 22, 2023

Copyright: © 2023 De Poli, Oyebode. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the paper and its Supporting Information files.

Funding: The Authors were funded by The Health Foundation, grant number 1274233. The funding source had no involvement in the study design; in the collection, analysis and interpretation of data; in the writing of the articles; and in the decision to submit it for publication.

Competing interests: Chiara De Poli had research grant funding from the National Institute for Health and Care Research, School of Social Care Research, grant number 106152/CBF/LSECDP-IF14. She currently has, as co-applicant, research grant funding by the National Institute of Health and Care Research - Three Schools Dementia Programme, grant number 102645/3SDRP/LSEACH-DP05. Jan Oyebode currently has research grant funding from the National Institute for Health Research, grant number 204266, Social Care for People with Young Onset Dementia.

Introduction

Research ethics and governance represent the regulatory and institutional cornerstones for the conduct of research involving human participants, aiming to oversee its ethical quality and protect research participants from harmful research practices. Since the Nuremberg code (1947) [ 1 ], respect for autonomy, justice, beneficence (i.e., to do good), and non-maleficence (i.e., to do no harm) have been recognised as core ethical principles of biomedical, experimental research involving human participants. These principles were embedded in international guidance and regulation (e.g., the Declaration of Helsinki by the World Medical Association (1964) [ 2 , 3 ], the International Ethical Guidelines for Biomedical Research Involving Human Subjects of the Council for International Organizations of Medical Sciences (CIOMS, 2016) [ 4 ] and in national research ethics frameworks (e.g., the US Belmont Report (1978) [ 5 ], the Canadian Tri-Council Policy Statement [ 6 ], and the UK Policy Framework for Health and Social Care Research [ 7 ]). Over time the application of this research ethics framework has been expanded from regulation of traditional biomedical research to also regulate social sciences, including health and social care research.

Extant research on research ethics has underscored the intrinsic complexity of establishing whether ethics oversight results in ethical research and participant protection. The use of processes and structures as surrogate measures for effectiveness of research ethics has been found particularly unsatisfactory [ 8 – 10 ]. Although there are several reasons to believe that research ethics processes and structures contribute to ensuring ethical research and the protection of research participants, little empirical evidence is available on whether and how research ethics institutions actually achieve these ends [ 9 , 11 , 12 ]. Alongside assumed benefits, negative or unwanted consequences of the research ethics system have been documented. At the procedural level, the apparent arbitrary nature of decision-making, long delays in obtaining research approvals, and the bureaucratic restrictions imposed on the conduct of studies are a frequent source of problems [ 8 , 13 ]. At the organisational level, the establishment of a research ethics industry [ 14 ], with a perceived emphasis on box ticking [ 15 , 16 ] and rule fetishization [ 17 ], ultimately concerned with issues around risk, litigation, and institutional reputation, seems to have contributed to an ‘ethics creep’ [ 17 ]. At an epistemological level, the problems of using a framework rooted in experimental, biomedical research to assess social sciences and research using non-experimental methods (e.g., big data research [ 18 ], social media research [ 19 ], research using machine learning [ 20 ], ethnography [ 21 ] and digital ethnography [ 22 ]) are well documented [ 23 – 26 ].

Research using qualitative or mixed methods [ 27 ] and less codified and predictable designs, such as participatory research (e.g., participatory action research, community-based participatory research) [ 28 ] and research using collaborative approaches (e.g., co-creation, co-design, co-production) [ 29 ], have been particularly affected. As a consequence of the fundamental poor alignment between the biomedical framework of research ethics and qualitative, participatory, and collaborative research, researchers have described their experience of navigating the research ethics system as “jumping through hoops” or “walking a tightrope”, or “something to get through” [ 30 , 31 ]. The requirement to submit a detailed research protocol to prospectively outline research activities clashes with the emergent nature of qualitative, participatory, and collaborative research [ 29 , 30 ]. The bureaucratic practices around consent that are used to operationalise the principle of autonomy are often unworkable for research with a strong relational component [ 17 , 32 – 34 ]. Additionally, research participants and co-researchers may disagree with the way the principle of participant protection is interpreted and risks and benefits are assessed by research ethics institutions [ 29 , 35 , 36 ]. These may be perceived as leaning towards paternalism, in particular in the case of populations with characteristics that are perceived as making them vulnerable [ 37 – 39 ].

If some of these features of qualitative, participatory, and collaborative research result in great scrutiny by research ethics institutions, other features with equally relevant ethical implications are not given due attention. For example, current research ethics frameworks designed to address the principle of justice (which requires the equitable distribution of both the burdens and the benefits of participation in research [ 40 ]) fail to consider how power relations between individuals or groups shape research and do not offer any mechanisms to help address the power differentials intrinsic to research [ 41 ]. Research ethics processes also have a blind spot in relation to gatekeepers, who have a substantial influence on who gets to participate and, conversely, who is excluded from research. There is no mechanism in place to oversee how they perform their role and whether they impact upon free choice of potential participants to take part in studies [ 34 ].

Alongside these issues reported for qualitative, participatory, and collaborative research that reaches the stage of seeking ethics approval, the academic debate has also aired concerns that research which is anticipated to be met with resistance by research ethics institutions is not actually pursued [ 17 , 42 , 43 ]. The perceived or expected barriers might deter researchers from conducting research on sensitive topics, involving vulnerable groups, or using more innovative methods. At best, this could contribute to homogenisation of the research landscape. At worst, it could undermine the role of qualitative, participatory, and collaborative research in promoting research inclusivity and social justice, and in answering research questions that no other research methods could address.

In order to move these debates forward, we conducted a study on research ethics aimed at generating a set of practical recommendations for improving how the research ethics system deals with participatory and collaborative research approaches (collaborative only, hereon). In this context, we used collaborative research as an umbrella term for various research approaches (e.g., participatory action research, community-based participatory research, co-creation, co-design, co-production) where participants are actively involved in shaping the research, beyond simply providing data, and where the primacy of academic knowledge is challenged by other types of knowledge (e.g., based on lived experience).

The study was organised in five consecutive phases. In the first phase, we carried out an analysis of UK research ethics policies, which informed a scoping review of the literature (phase 2). We then held an exploratory focus group with academic researchers in this field to understand their perspectives on the topic (phase 3). Results of these three phases informed a two-round Delphi study, involving academic researchers with experience of conducting participatory and collaborative research involving vulnerable groups in England (UK). The Delphi study aimed to generate consensus on what changes to the research ethics system should be considered to improve the ethics oversight of collaborative research (phase 4). A final focus group with experts was organised to inform the practical recommendations and explore their expected benefit (phase 5). This article reports the results of the first three phases of the work, whilst the remaining phases are reported elsewhere [ 44 ].

Through the analysis of policies (phase 1), we aimed to (i) understand what the UK research ethics system is intended to achieve and how it is designed to work, (ii) identify its underpinning principles, and (iii) map the operational processes and procedures which are designed and implemented to achieve the principles.

Since our work was carried out in the context of a UK-based study, the focus of the analysis was limited to UK research ethics policies, which reflect relevant domestic legislation (as set out in Appendix 2 of the UK Policy Framework for Health and Social Care Research [ 7 ],), but also draw on international standards, governance mechanisms, and good research practice (as per [ 7 ], para 3.4). By design, such policies have a deliberate wide scope: they do not, and possibly cannot, exhaustively compile principles, requirements, and standards that may be relevant for specific types of research, which are left to organisations with responsibilities under the national policy framework. In this sense, the UK system largely shares the bedrock of research ethics principles with other countries [ 45 – 48 ] and can be considered an example of a modern research ethics system. The analysis of policies was also instrumental to the development of the analytical framework of ‘Principles’ and ‘Processes’ that supported the scoping review of the literature that followed (phase 2).

The aim of the review was two-fold. Firstly, we aimed to understand how the normative principles and operational processes of research ethics play out in actual research that adopts participatory or collaborative approaches, often using qualitative methods, in the health and social care field. Secondly, we set out to map the recommendations that the literature had suggested to improve how the research ethics system deals with this type of research. The scoping review approach was deemed fit for the purpose of efficiently gathering and examining the extent, range, and nature of the literature available on this topic.

In phase 3, the exploratory focus group aimed to bring to light actual experiences of navigating the research ethics system from the perspective of active academic researchers with experience of conducting collaborative research in England (UK). By gathering their experiences, we were able to identify current patterns in the English context and to read them against the background of the literature review.

Analysis of UK research ethics policies

The analysis focused on the UK Policy Framework for Health and Social Care Research [ 7 ] and on UK Health Research Authority (HRA) policies publicly available online [ 49 , 50 ]. Policy documents were analysed thematically. The analysis proceeded deductively at first, with themes identified from the research ethics principles stated in the UK Policy Framework for Health and Social Care Research. The initial codebook was then expanded inductively, to include additional themes that were not codified as principles in the UK Policy Framework, but that appeared relevant. To help systematise the data collected, we divided the material under each theme into two categories: ‘Principles’ for data that referred to underpinning principles of the UK research ethics system, and ‘Processes’ for data describing the operational processes and procedures supporting the implementation of the principle ( Table 1 ). The Authors worked collaboratively: CDP started the data extraction and discussed the emerging results with JO as the analysis progressed. Instances of uncertainty or ambiguity were resolved through ongoing discussion.

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https://doi.org/10.1371/journal.pone.0296223.t001

Scoping review of the literature

The scoping review was conducted following the Arksey and O’Malley framework [ 51 ] and is reported based on the PRISMA extension for scoping reviews (PRISMA-ScR) [ 52 ]. The review was guided by the following questions: How does the current research ethics system work for collaborative research in health and social care? What are the challenges that the current research ethics framework poses to collaborative research in health and social care? What options have been discussed in the literature to overcome these challenges?

Eligibility criteria.

Articles examining the research ethics and governance systems in the context of collaborative research in the field of health and social care were included. They had to be written in English and published in peer-reviewed journals in the period January 2010-May 2020. The original search was updated in December 2022, to identify articles published between June 2020-December 2022. Three online databases (Web of Science, PubMed/Medline, PsycInfo) were searched in June 2020, using search strings available in S1 File . In December 2022, we re-ran the original search using the same online databases and the same search criteria. Retrieved studies were imported into a reference management software. After removing duplicates, titles, and abstracts of the retrieved results were screened by CDP for eligibility against the inclusion criteria. Full text of all possible eligible articles was retrieved and screened by CDP, with JO screening the articles for which eligibility was uncertain.

Data extraction and analysis.

Data extraction and analysis was conducted by CDP and iteratively discussed and reviewed by JO. The analysis was supported by an analytic framework organised around the themes identified in the analysis of policy documents. At the level of each theme, the analytical framework was organised as a 2X2 matrix. On the first dimension we placed the categories of ‘Principles’ and ‘Processes’, consistently with the way we had analysed the policy documents. On the second dimension, we used the categories of ‘Current system’ and ‘Options for improvement’ ( Table 2 ), to map the debate in relation to how the current research systems deal with collaborative research and to collect suggestions put forward to ensure a better fit of research ethics in the context of collaborative research. The resulting analytic framework was applied to each article. Each article was also charted in relation to its typology, country in which the research was conducted, research approach, and research population(s).

https://doi.org/10.1371/journal.pone.0296223.t002

As recommended by methodological guidance on scoping reviews [ 51 , 53 ], this analytical process allowed us to describe the literature available in this field. It also allowed us to systematically document how the set of a priori themes, derived from the policy documents, had been discussed in the literature. Lastly, it enabled us to identify, in relation to each theme, how the system currently works and opportunities for improvement.

Exploratory focus group.

Following approval by the London School of Economics and Political Science, as per the School’s research ethics policy, the exploratory focus group was conducted online, via Zoom, in May 2020 to discuss actual experiences of navigating the English research ethics system in the context collaborative research in the health and social care field. The emphasis in recruitment of participants was on identifying active researchers with relevant experience of undertaking collaborative research in health and social care, and therefore of having applied for ethical review in England (UK).

Twelve participants were identified or snowballed via the professional networks of the research team and invited by e-mail to take part. Ten academic researchers with different levels of relevant experience, some undertaking research involving populations deemed vulnerable, expressed interest and were sent background information about the study and what their participation would entail. All gave written consent to take part in the study ( Table 3 ).

https://doi.org/10.1371/journal.pone.0296223.t003

The group was facilitated by JO with assistance from CDP, both with similar research interests and experience. The discussion was audio-recorded with consent from participants.

The discussion lasted about two hours and was guided by two broad questions. We started off by asking participants about issues they had encountered in obtaining research governance and ethics approval for studies using collaborative approaches and involving groups deemed vulnerable. The second question invited participants to consider what changes could ensure that research governance and ethics approval processes were better suited for collaborative research with vulnerable groups.

The focus group was transcribed verbatim. Data were imported to Nvivo12 and analysed thematically using a deductive approach supported by the analytical framework developed for the study [ 54 ] ( Table 2 ).

The analysis of the UK Policy Framework [ 7 ] and HRA documents [ 49 , 50 ] resulted in 12 themes ( Table 4 ).

https://doi.org/10.1371/journal.pone.0296223.t004

Theme 1—General ethical principles is a general theme which reflected Principle 3 (Scientific and Ethical Conduct Research) of the UK Policy Framework, by which research projects are expected to be scientifically sound and guided by ethical principles in all their aspects [ 7 ].

We identified both principles and processes for three of the 11 remaining themes: Theme 3—Protection of research participants corresponds to Principle 8 (Benefits and risks) of the UK Policy Framework. The corresponding operational process revolves around the role of Research Ethics Committees (RECs, known as Institutional Review Boards (IRBs) in the US and Canada) to ensure that the rights, safety, dignity, and wellbeing of research participants are adequately protected [ 49 ]. Theme 6—The working of RECs reflects Principle 9 (Approval) of the UK Policy Framework. Operationally, this principle relies on Research Ethics Committees (RECs) providing ethical review of new applications and keeping approved applications under review [ 49 ]. The HRA Standard Operating Procedures for RECs make specific provision regarding the review process (e.g., ‘flagged’ RECs, Proportionate Review Service, expedited review) for different types of research [ 50 ]. Theme 7—The research protocol is equivalent to the Principle 6 (Protocol) of the UK Policy Framework. From an operational perspective, this translates into a requirement to submit the standard protocol for any new research study and a standard Notice of Substantial Amendment when significant changes to the original study are proposed [ 50 ].

The remaining eight themes substantially mirrored principles of the UK Policy Framework, but no corresponding operational process could be identified.

The search conducted in June 2020 yielded 230 references, of which 166 were unique records. After screening titles and abstracts, 109 articles were excluded. The full texts of the remaining 57 papers were retrieved and reviewed. A total of 30 articles were deemed relevant for inclusion. The December 2022 update search identified 23 further references, of which 10 were unique records. After screening titles and abstracts, eight articles were excluded. The full texts of the two remaining papers were retrieved and assessed, and one was included. Combining the two searches, a total of 31 articles were deemed relevant for inclusion in the review ( Table 5 ). The screening process is illustrated in Fig 1 .

https://doi.org/10.1371/journal.pone.0296223.g001

https://doi.org/10.1371/journal.pone.0296223.t005

Seven articles reported research based in Canada [ 28 , 30 , 56 , 61 – 63 , 75 ], seven reported research based in the USA [ 38 , 57 , 60 , 67 , 68 , 73 , 77 ], four in England or the UK [ 35 , 55 , 76 , 78 ], two in Scandinavian countries [ 32 , 71 ], one in Malta [ 69 ], and one in Australia [ 64 ]. Four referred to multiple countries (e.g., low and middle income countries [ 72 ], Ireland and the UK [ 59 ]). Of these, two did not specify the geographical setting in full [ 34 , 58 ]. Five articles did not provide any reference to the geographical setting of their work [ 29 , 65 , 66 , 70 , 74 ].

In terms of research design, 15 articles adopted a single or multiple case study design [ 32 , 34 , 71 , 75 – 78 , 35 , 55 , 56 , 58 , 61 , 64 , 67 , 69 ]. The majority of these presented recommendations for policy and research practice derived from the authors’ experiences of research ethics-related issues they had faced and navigated in their own studies. Six articles were commentaries offering critical reflections on research ethics, without reference to a specific empirical study [ 29 , 30 , 60 , 66 , 68 , 72 ]. Four articles reported on empirical studies that generated primary data: Guta et al’s work discussed the results of a content analysis of ethics review documentation submitted to Research Ethics Boards (REBs) [ 62 ], complemented by a qualitative study based on interviews with REC members, staff, and other key informants [ 28 , 63 ], whereas Shore et al’s article reported the results of a survey of community-engaged research studies reviewed by RECs [ 73 ].

Of the remaining articles, two were methodological and discussed research ethics implications of Community-based participatory research [ 57 ] and Participatory Action Research [ 67 ]. A further two were theoretical in nature: Ross et al presented a research ethics framework to support Community Engaged Research [ 38 ]; Lange et al [ 65 ] discussed the concept of vulnerability and its implications for research ethics. The remaining two were literature reviews. Doyle et al provided a synthesis of the literature that supported the design of a framework to aid the research ethics approval process by RECs [ 59 ]. Tamariz and colleagues’ systematic review identified the most common perceived barriers and facilitators to evaluating research ethics oversight for Community based participatory research [ 74 ].

Research methodologies underpinning the reviewed articles were wide-ranging. Some articles referred to participatory or collaborative research [ 32 , 35 , 72 ] or community engaged research [ 38 , 66 , 73 ] as loosely defined umbrella terms, or emphasised the use of qualitative research methods [ 30 , 34 , 59 , 64 , 68 – 70 , 75 , 76 ]. Other articles were grounded in specific definitions and epistemological traditions, such as Community-based participatory research [ 28 , 57 , 62 , 63 , 67 , 71 , 74 , 77 ] or Participatory Action Research [ 56 , 61 , 78 ]. One article positioned co-design as a collaborative approach to implementation research [ 29 ], one focused on collaborative approaches in quality improvement [ 60 ], and one referred to co-production in the context of participatory organisational research [ 55 ].

Study populations could be classified into two broad groups. About a third of the articles did not describe or provide a definition of their study population [ 28 , 29 , 74 , 30 , 34 , 38 , 57 , 60 , 62 , 63 , 73 ]. Such articles typically focused on a specific methodological approach and discussed its implications for research ethics, regardless of the study population or research setting. Of the remaining studies, three focused on vulnerable individuals broadly defined [ 34 , 65 , 68 ] and the others focused on specific populations deemed vulnerable. In these articles, vulnerability was defined according to demographic characteristics such as age (e.g., young [ 56 , 78 ] or older people [ 55 ]), illness (e.g., mental health problems [ 35 , 70 , 72 ], palliative care patients [ 76 ], people living with HIV/AIDS [ 66 ]) or disability [ 61 ], socio-economic deprivation [ 77 ], geography [ 71 ]. In other cases, vulnerability was framed as situational, being defined by individual circumstances at a specific point in time. These included grandparent caregivers [ 67 ], Lesbian, Gay, Bisexual, Transgender, Queer (LGBTQ) former foster youth [ 67 ], participants from small connected communities, which may pose challenges to the anonymity and confidentiality of research participants [ 58 , 69 ], or people diagnosed with a long-term condition who may move through vulnerable moments in their illness trajectory (such as rheumatoid arthritis [ 75 ]), and clinical staff and patients who had been involved in clinical incidents which made them temporarily vulnerable [ 64 ].

We found wide variation in the level of coverage of the twelve analytical themes ( Table 6 ). A few themes have been sparsely discussed. The theme on compliance with legislation was touched on only by one article. This highlighted the possible tension in decision-making processes about research ethics when pieces of relevant legislation or regulation are broad in scope and require (or allow) some degree of interpretation [ 77 ]. The theme on integrity, quality and transparency of research was discussed only by Øye and colleagues in two different but related articles. In the first, they discussed how gatekeepers may influence the way in which the recruitment of participants is carried out and reported [ 34 ]. In the second, they questioned the principle of scientific integrity and research independence in the context of collaborative research, when stakeholder groups with different interests and agendas, necessarily negotiate research plans and the reporting of research results [ 32 ]. The theme of accessible findings was discussed in two articles, suggesting ways in which RECs could support wider dissemination of research, beyond academic circles [ 57 , 62 ].

https://doi.org/10.1371/journal.pone.0296223.t006

Other themes have been explored more widely, often using the experiences, positive or negative, of their authors as a starting point to discuss how the ethics system currently handles collaborative research, to highlight good practices and identify recommendations for improvement. Several articles highlighted that the biomedical and technocratic approach of research ethics processes and the way in which RECs work are poorly aligned to collaborative research, its relational nature, emergent designs, inclusive approach, and do not allow the flexibility and ongoing adaptations that such research requires [ 28 , 29 ].

The literature has discussed the tension between the involvement of patients, service users, and the public in research–a key feature of collaborative research–and the protection of research participants–a primary concern of research ethics. Although the need for appropriate participant protection was consistently recognised [ 34 , 75 , 76 ], some authors highlighted that, at times, RECs showed an over-protective attitude towards participants, which ultimately could affect agency of individuals and their participation and inclusion in research [ 38 , 61 , 65 , 68 , 72 ]. Therefore, they argued for an overhaul of the way risks and benefits associated with qualitative and collaborative research are framed and assessed, considering that risks are often low (and lower than for biomedical research), whilst benefits from participation are apparent and should not be dismissed [ 38 , 57 , 59 , 60 , 73 , 76 , 78 ]. Moreover, they highlighted that, given the nature of collaborative research, benefits and risks can unfold both at the individual and at the community level and should be assessed accordingly [ 29 ].

Consent-seeking practices can be seen as an example of how research ethics principles are operationalised in the context of collaborative research [ 35 ]. The suitability and appropriateness of traditional consent-seeking procedures, by which participants are requested to give one-off consent in writing, were questioned with specific reference to collaborative research [ 55 , 57 ]. Similarly, traditional research ethics systems were perceived as being uneasy about co-researchers identified from groups labelled or potentially perceived as vulnerable [ 32 , 67 , 78 ].

The role of the researcher and the nature of the research protocol were also recurring themes. Some authors contended that the role of the researcher is relational and constructed continuously on the spot [ 34 ]. They argued that researcher’s skills and experience in attending to ethical relationships with participants and in self-reflection should be integrated into research ethics frameworks [ 72 , 75 ] and considered when defining acceptable levels of risk tolerance [ 59 ].

Several authors commented on the constraints of the biomedical framework that underpins the research protocols required by RECs [ 62 , 74 ]. Standard protocols do not fully allow articulation of the relational nature of collaborative research (e.g., to define the nature of the relationships across participants, co-researchers, and researchers, and establish how their power differentials will be addressed [ 61 ]). They also fail to accommodate its emergent and iterative nature, e.g., when initial research results inform subsequent data gathering and methodological choices [ 64 ], and those layers of everyday ethics which are intrinsic to collaborative research [ 35 ].

Privacy and confidentiality are further themes which have been covered in the literature. The blanket approach to anonymity as the bedrock of confidentiality and privacy was disputed: whilst for some research participants this may be appropriate (e.g., in small connected communities [ 58 , 69 ]), for others, protection of anonymity should be flexed to reflect participants’ preferences (e.g., in the case of young participants, who may perceive the requirement of anonymity as unjust and discriminatory when based on age [ 78 ]). Researchers argued that concepts of privacy and confidentiality are context-specific and culturally-constructed, and research ethics practices should be tailored accordingly.

The literature review highlighted two themes not included in the initial thematic framework. The first was the membership of RECs [ 28 , 29 , 32 , 56 , 57 , 60 , 62 , 74 ]: a recurrent perception was that experience and expertise of qualitative and collaborative research among REC members is minimal, affecting how applications are reviewed and approved. To overcome this, some authors recommend establishing special RECs for collaborative research.

Training was a further additional theme. The literature highlighted the need for REC members to receive training in the full range of research methods and study designs and also recommended that researchers, co-researchers, and gatekeepers engaged in collaborative research should be offered an opportunity to gain a deeper understanding of research ethics, REC culture, and processes [ 29 , 32 , 56 , 57 , 60 , 62 , 74 ].

Exploratory focus group

The analysis of the focus group data identified 9 of the twelve themes of the analytical framework ( Table 7 ).

https://doi.org/10.1371/journal.pone.0296223.t007

At a general level, participants described obtaining ethics approval as a bureaucratic hurdle, particularly burdensome for research involving groups deemed vulnerable by research ethics committees

“I feel the burden of newly found bureaucracy . As we were going through the procedures to prepare for our project , that involved people with dementia , one of the questions that emerged was how much more paperwork will it entail to involve them . Maybe it’s a bit trite , but there was a consideration of how can we involve this group less , so the burden on getting ethics is smaller .” (FG1-4)

They also talked about the poor fit between their research and the underpinnings, practices, and language of the research ethics framework within which they were expected to operate. Participants highlighted how the research ethics approval process posed great emphasis on the approval phase of a study, when the study is appraised prospectively, with less relevance given to the actual conduct of research

“One of the things that I found problematic is the extent to which the whole process is front-loaded . Ethics committees will be very paternalistic in the initial stages of giving approval to a piece of research , but then don’t seem to particularly be interested in monitoring the conduct of the research .” (FG1-3)

In relation to Theme 2—Patient, service user, and public involvement, participants highlighted that there could be scope to engage the public and ask what ethical research means to them

“Some of those concepts [about research ethics] haven’t really been aired , in terms of public contribution and what the public would say are important concepts when we think about ethics . There’s something about unravelling some of those concepts and saying , are they the right ones actually now ? Are they fit for purpose ? (…) And as soon as you start talking about the public , their view of what is ethical conduct around involvement or around research can feel different .” (FG1-6)

In relation to Theme 3—Protection of research participants, the group highlighted the protectionist approach that RECs seem to take towards research participants. They underscored the lack of a proportionality in the way risks and benefits are assessed, at times catastrophising the worst scenarios and discounting (or ignoring) possible benefits of research participation

“What’s interesting about it is (…) the very high level of paternalism that is triggered when you’re trying to organize consent process in a research context (…) which sits rather awkwardly with the idea of empowering members of the public , patients , participants in research , to make their own judgments about their involvement . And here we’re really only talking about studies which involve interviews and questionnaires from highly experienced researchers .” (FG1-5)

In their view, this approach was inconsistent with the ongoing discourse around involvement in health and social care research. In particular, they unravelled the tension between the involvement of groups who are seldom heard in research and the perceptions that RECs may have of these groups (such as homeless people as discussed in the extract below)

“People around the [research ethics] system have a particular view of what homeless people are like , and they’re all horribly vulnerable and we should never approach them . And often they’re not . They have quite a high degree of agency .” (FG1-8)

Alongside highlighting the need to shift towards a more proportionate, risk-based approach to research ethics oversight, participants also underscored the need to design processes better suited to ensure participant protection

“Ethical processes are very important , to make sure that we’re protecting the participants , and they are necessary . It’s just how we implement them in a way that’s most appropriate and acceptable and feasible for the people who are completing them …” (FG1-9)

In relation to Theme 5—Role and competence of researchers, in the experience of participants, the research ethics system seemed to be concerned with protecting participants from possible unethical behaviour of researchers, whose ethos and competencies are undervalued

“I feel sometimes as if I’m a delinquent , who hasn’t yet been found out . The system is geared to treat me as if I’m fundamentally likely to be irresponsible in my dealings with people who are involved in research with me . My experience is that researchers , if anything , are very cautious and careful and thoughtful about the way they engage in this kind of activity .” (FG1-5)

Participants also discussed how the research ethics system is ambivalent in the way the idea of trust towards researchers is framed. On the one hand, the system seems to rely on a front-loaded process that aims to pre-empt ethical issues at the outset of a study and to foresee procedures to mitigate potential issues. On the other, when in the field, researchers operate with substantial degrees of freedom

“Once you get through , there is quite a lot of trust . All the day-to-day ethical decisions we make as researchers… we’re being trusted on those .” (FG1-10)

The group agreed that research ethics policies and institutions should move away from research ethics pivoted around the written word and accept the relational and situated dimension of research ethics

“(Any changes) should be on the basis of trying to introduce more trust into the system . The trustees seem to rely so much on the paperwork rather than on the people with the people , and the trust and responsibilities that people have .” (FG1-8)

Related to Theme 6—The working of RECs, participants described the interactions between research teams and RECs, at times perceived as confrontational and transactional

“It took three iterations of the REC meeting to be able to get approval in the end to involve people who lacked capacity in the research , and then it was at the expense of having to make other concessions .” (FG1-3)

They also highlighted how the review process of research aiming to involve groups deemed vulnerable was in their experience more burdensome than for other populations

“We did eventually get approval for that (i . e ., a study that included people who lacked capacity) . Although it took more times going back to the committee than other projects have .” (FG1-2)

Participants could envision the research ethics approval being handled in a more relational way and as a two-way process, by which RECs and researchers could identify, discuss, and address ethical matters together as the study unfolds. This shift could be beneficial in particular for research with an emergent design, given the expectation that amendments of the research protocol would be required as the research process progresses

“I wish that the whole process could be more collegiate in the way that it’s carried out . That it could be more like a process of mentoring throughout the whole research process , than having to pass an exam at the beginning of it .” (FG1-3)

Participants discussed options to mitigate the uneasiness of some RECs in dealing with collaborative research approaches, specific topics, and research groups that could be perceived as vulnerable

“I wonder if it’s possible to have RECs that are more topic-specific . Or since there are specific consideration for working with vulnerable populations , can there be one or two RECs that specialize on this particular concern ? And they apply the principles in a consistent way across the country .” (FG1-1)

Participants reported several issues in relation to Theme 7—The research protocol. The current protocol template was described as unfit for use in the context of collaborative research using emergent designs

“You find you have to fit your project into a particular kind of language and forms and structure in order to get through .” (FG1-10)

Researchers found the information sheets that they were required to use when recruiting study participants particularly problematic. They felt that these documents looked officious and were hard for the lay public to understand, seemingly protecting the institutions sponsoring the study rather than the participants themselves. Participants suggested that documents supporting participant recruitment could be simplified in many ways

“Information sheets that it’s in one to two pages maximum in decent size font , without all of the sort of legal clauses that are really complicated to understand . (…) I’d really like to see it literally in very easy , accessible everyday language .” (FG1-9)

Relatedly, participants also highlighted that in their experience consent-seeking was operationalised in standardised, one-off procedures heavily reliant on the written word (e.g., completing and signing a consent form) rather than as a relational, continuous process. They also raised issues about how the Mental Capacity Act (MCA) is interpreted by RECs. This resulted in limiting the opportunities for individuals with fluctuating capacity and declining cognitive function to take part in research, or in resorting to secondary consent, in contradiction with the discourse around empowerment, or in research lacking real-world relevance

“During the XX research study , I was put under pressure by a REC to only recruit people who had capacity , even though there would have been a small minority of the people living in that care environment , on the basis that Sections 30–33 of the Mental Capacity Act [which relate to research with people who may lack capacity in England and Wales] say that you can include people who lack capacity only if it’s not possible to answer your research question by including people who do have capacity . And I was told by the Chair of that REC that the representativeness of the research was not an issue , as far as they were concerned . It didn’t matter if the participants who were actually recruited represented the people living in that care environment or not , because they were going by the letter of the Mental Capacity Act .” (FG1-3)

Lastly, they underscored the burden posed to research by current legislation (or its interpretation by RECs, as illustrated by the extract above on the MCA) and how the legal requirements were embedded in the documentation used for research purposes (e.g., to comply with legislation on privacy and confidentiality) (Theme 9 –Compliance with legislation).

No data were collected in relation to themes 4, 11, and 12. One additional theme on local research governance arrangements when carrying out research involving statutory organisations (e.g., NHS hospital trusts) was identified

“The local R&D governance processes raise many of the same issues (…) . The system , certainly at the local level , is still really organized as if everyone’s doing a clinical trial ” (FG1-5)

This article provides an overview of the literature on research ethics in the context of collaborative health and social care research and complements it with the perspectives of active academic researchers with experience of navigating the English research ethics system.

The thematic framework that supported the scoping review and the analysis of the focus group data was organised around the normative principles and operational processes identified with the analysis of UK research ethics policies.

In taking this approach, this work focuses on research ethics as a function of the apparatus of research governance (i.e., the broad range of regulations, principles, and standards of good practice in research) and moves away from previous work conflating the discussion of research ethics requirements and ethical practice in research [ 80 – 82 ].

Importantly, using an analytical framework that stems from a normative standpoint allowed comparison of how the research ethics system is expected to work vs how it works in practice, according to the literature and based on actual experiences of researchers in the field. We applied the framework to the literature identified with the scoping review and updated and improved on a previous review assessing the literature published between 1990 and 2002 against the ethical principles outlined in the Belmont Report (i.e., autonomy, beneficence, and justice) [ 83 ]. We then used the framework to analyse focus group data, generating original empirical evidence about how the research ethics system is currently experienced by active researchers undertaking collaborative research in England.

Our review shows that the literature on this topic is heterogenous (e.g., in terms of language used to identify research using collaborative approaches) and broad in scope. By mapping out how key ethical principles and processes have been dealt with in the literature, it shows that the coverage received by each theme varies substantially. Despite being among the stated principles underpinning research ethics policies, themes around compliance with legislation, integrity, quality and transparency of research, and accessibility of research findings were sparsely covered in the literature. Similarly, they were not discussed by focus group participants as extensively as other topics. Reasons for this are unclear, but it may be that these themes are perceived as peripheral to research ethics per se and are expected to be addressed at different points in the wider research systems (e.g., accessibility of research findings may be addressed prospectively at the point of research funding application and/or at the end of a study, and may be largely seen as a concern of research teams and research funders, not of RECs).

Other themes, such as the working of RECs, the research protocol, and the protection of research participants were found to have received substantial attention in the literature and resonated among focus group participants.

Through the review process, it also became apparent that two themes (‘Training on research ethics’ and ‘REC membership’) discussed in the literature were not captured by the analytical framework we developed from policy documents. The lack of consideration of these two themes seems to reflect the dominant epistemological framework underpinning research ethics policies, at least in the UK context, since international guidance addresses both [ 4 ]. In relation to training, the UK Policy Framework looks exclusively at competencies and qualifications of research teams (Principle 2 Competence [ 7 ]), echoing one of the recommendations of the Helsinki Declaration (“Medical research involving human subjects must be conducted only by individuals with the appropriate ethics and scientific education, training and qualifications” [ 3 ]), taking for granted that REC members are competent to review any type of study regardless of their actual research expertise. Policies do not address REC membership and their expertise either. Historically, this has led to co-option of members with quantitative expertise, well-aligned to the dominant epistemological framework of research ethics, with other types of expertise under-represented [ 30 ]. This issue was also pinpointed by focus group participants who aired the idea of establishing RECs with specialist interest in specific research approaches, topics, or populations.

We note that our review did not find effectiveness of research ethics as an emergent theme across the body of the literature we included. Therefore, this work does not contribute to the ongoing debate about the effectiveness of ethics processes [ 8 , 9 , 11 , 12 ].

Looking at the results across themes, principles, and processes, findings from the literature and from the focus group were highly concordant. The pattern that emerges from both the literature and the focus group converges around issues in how the research ethics system deals with collaborative research and how the research ethics system negatively affects what collaborative research is conducted, and how. On the one hand, this could represent compelling evidence that the positivist underpinnings of research ethics oversight make it unfit for the purpose of reviewing research which does not sit within a positivist paradigm. On the other hand, some of these issues have also been reported in relation to biomedical, experimental research, for example in relation to informed consent [ 84 ], risk-benefit assessments [ 85 ], and the emphasis on procedures and documents to the detriment of day-to-day conduct of research [ 86 ]. Altogether these findings provide empirical corroboration of the concept of ethics creep [ 63 ]: the regulatory structure of the ethics bureaucracy has been expanding outward (e.g., taking over research using collaborative, non-experimental approaches in the social sciences) while at the same time intensifying the regulation of practices deemed to fall within its original scope (i.e., biomedical, experimental research). Consistently with this finding, this work adds to the literature documenting burdens associated with research ethics processes [ 9 , 87 ].

Indeed, the overarching discourse that emerges from both the literature and the focus group points towards the need for an overhaul of the rule-based, procedural approach to ethics threaded throughout current regulatory policies and structures, and endorses processes of ‘micro ethics’ [ 42 ], ‘situated ethics’ [ 34 , 88 , 89 ], relational ethics [ 90 , 91 ], that place emphasis on ‘ethical mindfulness’ [ 92 ] and reflexivity [ 93 ] on the part of individual researchers.

In this vein, this work also offers a rich catalogue of options for improving how the research ethics system could deal with collaborative research. Improvements expressed at the level of principles (e.g., framing consent as an ongoing process or embedding some degree of tolerance around risk, both discussed in the literature and among focus group participants) could open a line of work for research ethics institutions interested in exploring how to translate these principles into institutional processes. Among those expressed at the level of processes, some could be considered for implementation by research ethics institutions (e.g., the creation of specialist RECs, as suggested by focus group participants), others could be used as practical recommendations and advice for researchers navigating the research ethics system.

It is important to recognise strengths and weaknesses of this work. Our analytical framework was based on the analysis of research ethics policies published by UK institutions. However, the themes themselves are consistent with international research ethics frameworks currently in use and the analytical categories of ‘Principles’ and ‘Processes’ are broad enough to ensure that the results of the review are relevant beyond the UK context.

To our knowledge, the scoping review is the first attempt to map the academic literature discussing how the research ethics system deals with collaborative research in the health and social care field. The review identified journal articles published between 2010 and 2022 and indexed in three online academic research databases. Most of the included article were published between 2010 and 2015, when collaborative research approaches became increasingly popular. The academic debate about research ethics flourished at this time [ 29 ], with researchers sharing their experience of navigating the research ethics approval process for collaborative studies and often offering guidance and advice to others with similar research interests. This may have contributed developing a community of practice comfortable with addressing the requirements of research ethics. Perhaps as a result, the scholarly interest in writing about this topic in academic outlets subsequently faded away, to be replaced by methodological and good practice guidance published in the grey literature. Although this was outside the scope of this work, we are aware that resources have been made available by organisations such as those under the WHO umbrella (e.g., [ 94 ]), national research infrastructure (e.g., [ 95 , 96 ]), University-based Research Ethics Committees, and organisations acting as research facilitators and gatekeepers (e.g., [ 97 ]).

The identification of focus group participants began from our professional networks, which may have led to a dominance of participants from certain fields (e.g., dementia care and social care research) and exclusion of others. This could have biased the nature of the discussion towards certain themes or experiences. Also, the focus group was conducted at the beginning of the COVID pandemic, which affected the recruitment of participants.

Conclusions

The need for regulation and ethics oversight of research using collaborative approaches is not questioned. It is clear, however, that the biomedical regulatory framework currently in use presents obstacles to this type of research. This work documents the wide range of issues that researchers may experience when navigating the research ethics system in relation to research adopting a collaborative approach but, more importantly, it also offers options that could help address those issues within the current framework of research ethics.

It would be unrealistic to expect that every option identified could be immediately taken up and seamlessly implemented, and will then deliver positive results. Some practical recommendations could be voluntarily adopted by research teams and RECs alike and could help streamline some elements or procedures of the research ethics system. However, other options would require formal and procedural changes in research ethics processes that should be initiated by relevant institutions. Some of these may need to be accompanied by fundamental changes in the culture that surrounds research ethics, from it being a bureaucratic, prospective, front-loaded process taking place in a confrontational environment to an opportunity to think through ethical issues throughout a study in the context of a formative and collaborative process.

We hope that this work will help move the debate onwards and contribute to an agenda for change of research ethics for collaborative research in the health and social care field, and beyond.

Supporting information

S1 file. scoping review of the literature–search strings..

https://doi.org/10.1371/journal.pone.0296223.s001

S2 File. Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist.

https://doi.org/10.1371/journal.pone.0296223.s002

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Your environment. your health., what is ethics in research & why is it important, by david b. resnik, j.d., ph.d..

December 23, 2020

The ideas and opinions expressed in this essay are the author’s own and do not necessarily represent those of the NIH, NIEHS, or US government.

When most people think of ethics (or morals), they think of rules for distinguishing between right and wrong, such as the Golden Rule ("Do unto others as you would have them do unto you"), a code of professional conduct like the Hippocratic Oath ("First of all, do no harm"), a religious creed like the Ten Commandments ("Thou Shalt not kill..."), or a wise aphorisms like the sayings of Confucius. This is the most common way of defining "ethics": norms for conduct that distinguish between acceptable and unacceptable behavior.

Most people learn ethical norms at home, at school, in church, or in other social settings. Although most people acquire their sense of right and wrong during childhood, moral development occurs throughout life and human beings pass through different stages of growth as they mature. Ethical norms are so ubiquitous that one might be tempted to regard them as simple commonsense. On the other hand, if morality were nothing more than commonsense, then why are there so many ethical disputes and issues in our society?

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One plausible explanation of these disagreements is that all people recognize some common ethical norms but interpret, apply, and balance them in different ways in light of their own values and life experiences. For example, two people could agree that murder is wrong but disagree about the morality of abortion because they have different understandings of what it means to be a human being.

Most societies also have legal rules that govern behavior, but ethical norms tend to be broader and more informal than laws. Although most societies use laws to enforce widely accepted moral standards and ethical and legal rules use similar concepts, ethics and law are not the same. An action may be legal but unethical or illegal but ethical. We can also use ethical concepts and principles to criticize, evaluate, propose, or interpret laws. Indeed, in the last century, many social reformers have urged citizens to disobey laws they regarded as immoral or unjust laws. Peaceful civil disobedience is an ethical way of protesting laws or expressing political viewpoints.

Another way of defining 'ethics' focuses on the disciplines that study standards of conduct, such as philosophy, theology, law, psychology, or sociology. For example, a "medical ethicist" is someone who studies ethical standards in medicine. One may also define ethics as a method, procedure, or perspective for deciding how to act and for analyzing complex problems and issues. For instance, in considering a complex issue like global warming , one may take an economic, ecological, political, or ethical perspective on the problem. While an economist might examine the cost and benefits of various policies related to global warming, an environmental ethicist could examine the ethical values and principles at stake.

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Many different disciplines, institutions , and professions have standards for behavior that suit their particular aims and goals. These standards also help members of the discipline to coordinate their actions or activities and to establish the public's trust of the discipline. For instance, ethical standards govern conduct in medicine, law, engineering, and business. Ethical norms also serve the aims or goals of research and apply to people who conduct scientific research or other scholarly or creative activities. There is even a specialized discipline, research ethics, which studies these norms. See Glossary of Commonly Used Terms in Research Ethics and Research Ethics Timeline .

There are several reasons why it is important to adhere to ethical norms in research. First, norms promote the aims of research , such as knowledge, truth, and avoidance of error. For example, prohibitions against fabricating , falsifying, or misrepresenting research data promote the truth and minimize error.

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Second, since research often involves a great deal of cooperation and coordination among many different people in different disciplines and institutions, ethical standards promote the values that are essential to collaborative work , such as trust, accountability, mutual respect, and fairness. For example, many ethical norms in research, such as guidelines for authorship , copyright and patenting policies , data sharing policies, and confidentiality rules in peer review, are designed to protect intellectual property interests while encouraging collaboration. Most researchers want to receive credit for their contributions and do not want to have their ideas stolen or disclosed prematurely.

Third, many of the ethical norms help to ensure that researchers can be held accountable to the public . For instance, federal policies on research misconduct, conflicts of interest, the human subjects protections, and animal care and use are necessary in order to make sure that researchers who are funded by public money can be held accountable to the public.

Fourth, ethical norms in research also help to build public support for research. People are more likely to fund a research project if they can trust the quality and integrity of research.

Finally, many of the norms of research promote a variety of other important moral and social values , such as social responsibility, human rights, animal welfare, compliance with the law, and public health and safety. Ethical lapses in research can significantly harm human and animal subjects, students, and the public. For example, a researcher who fabricates data in a clinical trial may harm or even kill patients, and a researcher who fails to abide by regulations and guidelines relating to radiation or biological safety may jeopardize his health and safety or the health and safety of staff and students.

Codes and Policies for Research Ethics

Given the importance of ethics for the conduct of research, it should come as no surprise that many different professional associations, government agencies, and universities have adopted specific codes, rules, and policies relating to research ethics. Many government agencies have ethics rules for funded researchers.

• National Institutes of Health (NIH)
• National Science Foundation (NSF)
• Food and Drug Administration (FDA)
• Environmental Protection Agency (EPA)
• US Department of Agriculture (USDA)
• Singapore Statement on Research Integrity
• American Chemical Society, The Chemist Professional’s Code of Conduct
• Code of Ethics (American Society for Clinical Laboratory Science)
• American Psychological Association, Ethical Principles of Psychologists and Code of Conduct
• Statement on Professional Ethics (American Association of University Professors)
• Nuremberg Code
• World Medical Association's Declaration of Helsinki

Ethical Principles

The following is a rough and general summary of some ethical principles that various codes address*:

Strive for honesty in all scientific communications. Honestly report data, results, methods and procedures, and publication status. Do not fabricate, falsify, or misrepresent data. Do not deceive colleagues, research sponsors, or the public.

Objectivity

Strive to avoid bias in experimental design, data analysis, data interpretation, peer review, personnel decisions, grant writing, expert testimony, and other aspects of research where objectivity is expected or required. Avoid or minimize bias or self-deception. Disclose personal or financial interests that may affect research.

Keep your promises and agreements; act with sincerity; strive for consistency of thought and action.

Carefulness

Avoid careless errors and negligence; carefully and critically examine your own work and the work of your peers. Keep good records of research activities, such as data collection, research design, and correspondence with agencies or journals.

Share data, results, ideas, tools, resources. Be open to criticism and new ideas.

Transparency

Disclose methods, materials, assumptions, analyses, and other information needed to evaluate your research.

Accountability

Take responsibility for your part in research and be prepared to give an account (i.e. an explanation or justification) of what you did on a research project and why.

Intellectual Property

Honor patents, copyrights, and other forms of intellectual property. Do not use unpublished data, methods, or results without permission. Give proper acknowledgement or credit for all contributions to research. Never plagiarize.

Confidentiality

Protect confidential communications, such as papers or grants submitted for publication, personnel records, trade or military secrets, and patient records.

Responsible Publication

Publish in order to advance research and scholarship, not to advance just your own career. Avoid wasteful and duplicative publication.

Responsible Mentoring

Help to educate, mentor, and advise students. Promote their welfare and allow them to make their own decisions.

Respect for Colleagues

Respect your colleagues and treat them fairly.

Social Responsibility

Strive to promote social good and prevent or mitigate social harms through research, public education, and advocacy.

Non-Discrimination

Avoid discrimination against colleagues or students on the basis of sex, race, ethnicity, or other factors not related to scientific competence and integrity.

Maintain and improve your own professional competence and expertise through lifelong education and learning; take steps to promote competence in science as a whole.

Know and obey relevant laws and institutional and governmental policies.

Animal Care

Show proper respect and care for animals when using them in research. Do not conduct unnecessary or poorly designed animal experiments.

Human Subjects protection

When conducting research on human subjects, minimize harms and risks and maximize benefits; respect human dignity, privacy, and autonomy; take special precautions with vulnerable populations; and strive to distribute the benefits and burdens of research fairly.

* Adapted from Shamoo A and Resnik D. 2015. Responsible Conduct of Research, 3rd ed. (New York: Oxford University Press).

Ethical Decision Making in Research

Although codes, policies, and principles are very important and useful, like any set of rules, they do not cover every situation, they often conflict, and they require interpretation. It is therefore important for researchers to learn how to interpret, assess, and apply various research rules and how to make decisions and act ethically in various situations. The vast majority of decisions involve the straightforward application of ethical rules. For example, consider the following case:

The research protocol for a study of a drug on hypertension requires the administration of the drug at different doses to 50 laboratory mice, with chemical and behavioral tests to determine toxic effects. Tom has almost finished the experiment for Dr. Q. He has only 5 mice left to test. However, he really wants to finish his work in time to go to Florida on spring break with his friends, who are leaving tonight. He has injected the drug in all 50 mice but has not completed all of the tests. He therefore decides to extrapolate from the 45 completed results to produce the 5 additional results.

Many different research ethics policies would hold that Tom has acted unethically by fabricating data. If this study were sponsored by a federal agency, such as the NIH, his actions would constitute a form of research misconduct , which the government defines as "fabrication, falsification, or plagiarism" (or FFP). Actions that nearly all researchers classify as unethical are viewed as misconduct. It is important to remember, however, that misconduct occurs only when researchers intend to deceive : honest errors related to sloppiness, poor record keeping, miscalculations, bias, self-deception, and even negligence do not constitute misconduct. Also, reasonable disagreements about research methods, procedures, and interpretations do not constitute research misconduct. Consider the following case:

Dr. T has just discovered a mathematical error in his paper that has been accepted for publication in a journal. The error does not affect the overall results of his research, but it is potentially misleading. The journal has just gone to press, so it is too late to catch the error before it appears in print. In order to avoid embarrassment, Dr. T decides to ignore the error.

Dr. T's error is not misconduct nor is his decision to take no action to correct the error. Most researchers, as well as many different policies and codes would say that Dr. T should tell the journal (and any coauthors) about the error and consider publishing a correction or errata. Failing to publish a correction would be unethical because it would violate norms relating to honesty and objectivity in research.

There are many other activities that the government does not define as "misconduct" but which are still regarded by most researchers as unethical. These are sometimes referred to as " other deviations " from acceptable research practices and include:

• Publishing the same paper in two different journals without telling the editors
• Submitting the same paper to different journals without telling the editors
• Not informing a collaborator of your intent to file a patent in order to make sure that you are the sole inventor
• Including a colleague as an author on a paper in return for a favor even though the colleague did not make a serious contribution to the paper
• Discussing with your colleagues confidential data from a paper that you are reviewing for a journal
• Using data, ideas, or methods you learn about while reviewing a grant or a papers without permission
• Trimming outliers from a data set without discussing your reasons in paper
• Using an inappropriate statistical technique in order to enhance the significance of your research
• Bypassing the peer review process and announcing your results through a press conference without giving peers adequate information to review your work
• Conducting a review of the literature that fails to acknowledge the contributions of other people in the field or relevant prior work
• Stretching the truth on a grant application in order to convince reviewers that your project will make a significant contribution to the field
• Stretching the truth on a job application or curriculum vita
• Giving the same research project to two graduate students in order to see who can do it the fastest
• Overworking, neglecting, or exploiting graduate or post-doctoral students
• Failing to keep good research records
• Failing to maintain research data for a reasonable period of time
• Making derogatory comments and personal attacks in your review of author's submission
• Promising a student a better grade for sexual favors
• Using a racist epithet in the laboratory
• Making significant deviations from the research protocol approved by your institution's Animal Care and Use Committee or Institutional Review Board for Human Subjects Research without telling the committee or the board
• Not reporting an adverse event in a human research experiment
• Wasting animals in research
• Exposing students and staff to biological risks in violation of your institution's biosafety rules
• Sabotaging someone's work
• Stealing supplies, books, or data
• Rigging an experiment so you know how it will turn out
• Making unauthorized copies of data, papers, or computer programs
• Owning over $10,000 in stock in a company that sponsors your research and not disclosing this financial interest
• Deliberately overestimating the clinical significance of a new drug in order to obtain economic benefits

These actions would be regarded as unethical by most scientists and some might even be illegal in some cases. Most of these would also violate different professional ethics codes or institutional policies. However, they do not fall into the narrow category of actions that the government classifies as research misconduct. Indeed, there has been considerable debate about the definition of "research misconduct" and many researchers and policy makers are not satisfied with the government's narrow definition that focuses on FFP. However, given the huge list of potential offenses that might fall into the category "other serious deviations," and the practical problems with defining and policing these other deviations, it is understandable why government officials have chosen to limit their focus.

Finally, situations frequently arise in research in which different people disagree about the proper course of action and there is no broad consensus about what should be done. In these situations, there may be good arguments on both sides of the issue and different ethical principles may conflict. These situations create difficult decisions for research known as ethical or moral dilemmas . Consider the following case:

Dr. Wexford is the principal investigator of a large, epidemiological study on the health of 10,000 agricultural workers. She has an impressive dataset that includes information on demographics, environmental exposures, diet, genetics, and various disease outcomes such as cancer, Parkinson’s disease (PD), and ALS. She has just published a paper on the relationship between pesticide exposure and PD in a prestigious journal. She is planning to publish many other papers from her dataset. She receives a request from another research team that wants access to her complete dataset. They are interested in examining the relationship between pesticide exposures and skin cancer. Dr. Wexford was planning to conduct a study on this topic.

Dr. Wexford faces a difficult choice. On the one hand, the ethical norm of openness obliges her to share data with the other research team. Her funding agency may also have rules that obligate her to share data. On the other hand, if she shares data with the other team, they may publish results that she was planning to publish, thus depriving her (and her team) of recognition and priority. It seems that there are good arguments on both sides of this issue and Dr. Wexford needs to take some time to think about what she should do. One possible option is to share data, provided that the investigators sign a data use agreement. The agreement could define allowable uses of the data, publication plans, authorship, etc. Another option would be to offer to collaborate with the researchers.

The following are some step that researchers, such as Dr. Wexford, can take to deal with ethical dilemmas in research:

What is the problem or issue?

It is always important to get a clear statement of the problem. In this case, the issue is whether to share information with the other research team.

What is the relevant information?

Many bad decisions are made as a result of poor information. To know what to do, Dr. Wexford needs to have more information concerning such matters as university or funding agency or journal policies that may apply to this situation, the team's intellectual property interests, the possibility of negotiating some kind of agreement with the other team, whether the other team also has some information it is willing to share, the impact of the potential publications, etc.

What are the different options?

People may fail to see different options due to a limited imagination, bias, ignorance, or fear. In this case, there may be other choices besides 'share' or 'don't share,' such as 'negotiate an agreement' or 'offer to collaborate with the researchers.'

How do ethical codes or policies as well as legal rules apply to these different options?

The university or funding agency may have policies on data management that apply to this case. Broader ethical rules, such as openness and respect for credit and intellectual property, may also apply to this case. Laws relating to intellectual property may be relevant.

Are there any people who can offer ethical advice?

It may be useful to seek advice from a colleague, a senior researcher, your department chair, an ethics or compliance officer, or anyone else you can trust. In the case, Dr. Wexford might want to talk to her supervisor and research team before making a decision.

After considering these questions, a person facing an ethical dilemma may decide to ask more questions, gather more information, explore different options, or consider other ethical rules. However, at some point he or she will have to make a decision and then take action. Ideally, a person who makes a decision in an ethical dilemma should be able to justify his or her decision to himself or herself, as well as colleagues, administrators, and other people who might be affected by the decision. He or she should be able to articulate reasons for his or her conduct and should consider the following questions in order to explain how he or she arrived at his or her decision:

• Which choice will probably have the best overall consequences for science and society?
• Which choice could stand up to further publicity and scrutiny?
• Which choice could you not live with?
• Think of the wisest person you know. What would he or she do in this situation?
• Which choice would be the most just, fair, or responsible?

After considering all of these questions, one still might find it difficult to decide what to do. If this is the case, then it may be appropriate to consider others ways of making the decision, such as going with a gut feeling or intuition, seeking guidance through prayer or meditation, or even flipping a coin. Endorsing these methods in this context need not imply that ethical decisions are irrational, however. The main point is that human reasoning plays a pivotal role in ethical decision-making but there are limits to its ability to solve all ethical dilemmas in a finite amount of time.

Promoting Ethical Conduct in Science

Do U.S. research institutions meet or exceed federal mandates for instruction in responsible conduct of research? A national survey

 Read about U.S. research instutuins follow federal manadates for ethics in research 

Learn more about NIEHS Research

Most academic institutions in the US require undergraduate, graduate, or postgraduate students to have some education in the responsible conduct of research (RCR) . The NIH and NSF have both mandated training in research ethics for students and trainees. Many academic institutions outside of the US have also developed educational curricula in research ethics

Those of you who are taking or have taken courses in research ethics may be wondering why you are required to have education in research ethics. You may believe that you are highly ethical and know the difference between right and wrong. You would never fabricate or falsify data or plagiarize. Indeed, you also may believe that most of your colleagues are highly ethical and that there is no ethics problem in research..

If you feel this way, relax. No one is accusing you of acting unethically. Indeed, the evidence produced so far shows that misconduct is a very rare occurrence in research, although there is considerable variation among various estimates. The rate of misconduct has been estimated to be as low as 0.01% of researchers per year (based on confirmed cases of misconduct in federally funded research) to as high as 1% of researchers per year (based on self-reports of misconduct on anonymous surveys). See Shamoo and Resnik (2015), cited above.

Clearly, it would be useful to have more data on this topic, but so far there is no evidence that science has become ethically corrupt, despite some highly publicized scandals. Even if misconduct is only a rare occurrence, it can still have a tremendous impact on science and society because it can compromise the integrity of research, erode the public’s trust in science, and waste time and resources. Will education in research ethics help reduce the rate of misconduct in science? It is too early to tell. The answer to this question depends, in part, on how one understands the causes of misconduct. There are two main theories about why researchers commit misconduct. According to the "bad apple" theory, most scientists are highly ethical. Only researchers who are morally corrupt, economically desperate, or psychologically disturbed commit misconduct. Moreover, only a fool would commit misconduct because science's peer review system and self-correcting mechanisms will eventually catch those who try to cheat the system. In any case, a course in research ethics will have little impact on "bad apples," one might argue.

According to the "stressful" or "imperfect" environment theory, misconduct occurs because various institutional pressures, incentives, and constraints encourage people to commit misconduct, such as pressures to publish or obtain grants or contracts, career ambitions, the pursuit of profit or fame, poor supervision of students and trainees, and poor oversight of researchers (see Shamoo and Resnik 2015). Moreover, defenders of the stressful environment theory point out that science's peer review system is far from perfect and that it is relatively easy to cheat the system. Erroneous or fraudulent research often enters the public record without being detected for years. Misconduct probably results from environmental and individual causes, i.e. when people who are morally weak, ignorant, or insensitive are placed in stressful or imperfect environments. In any case, a course in research ethics can be useful in helping to prevent deviations from norms even if it does not prevent misconduct. Education in research ethics is can help people get a better understanding of ethical standards, policies, and issues and improve ethical judgment and decision making. Many of the deviations that occur in research may occur because researchers simply do not know or have never thought seriously about some of the ethical norms of research. For example, some unethical authorship practices probably reflect traditions and practices that have not been questioned seriously until recently. If the director of a lab is named as an author on every paper that comes from his lab, even if he does not make a significant contribution, what could be wrong with that? That's just the way it's done, one might argue. Another example where there may be some ignorance or mistaken traditions is conflicts of interest in research. A researcher may think that a "normal" or "traditional" financial relationship, such as accepting stock or a consulting fee from a drug company that sponsors her research, raises no serious ethical issues. Or perhaps a university administrator sees no ethical problem in taking a large gift with strings attached from a pharmaceutical company. Maybe a physician thinks that it is perfectly appropriate to receive a $300 finder’s fee for referring patients into a clinical trial.

If "deviations" from ethical conduct occur in research as a result of ignorance or a failure to reflect critically on problematic traditions, then a course in research ethics may help reduce the rate of serious deviations by improving the researcher's understanding of ethics and by sensitizing him or her to the issues.

Finally, education in research ethics should be able to help researchers grapple with the ethical dilemmas they are likely to encounter by introducing them to important concepts, tools, principles, and methods that can be useful in resolving these dilemmas. Scientists must deal with a number of different controversial topics, such as human embryonic stem cell research, cloning, genetic engineering, and research involving animal or human subjects, which require ethical reflection and deliberation.

• Open access
• Published: 07 August 2024

Ethical considerations in public engagement: developing tools for assessing the boundaries of research and involvement

• Jaime Garcia-Iglesias 1 ,
• Iona Beange 2 ,
• Donald Davidson 2 ,
• Suzanne Goopy 3 ,
• Huayi Huang 3 ,
• Fiona Murray 4 ,
• Carol Porteous 5 ,
• Elizabeth Stevenson 6 ,
• Sinead Rhodes 7 ,
• Faye Watson 8 &
• Sue Fletcher-Watson 7  

Research Involvement and Engagement volume  10 , Article number:  83 ( 2024 ) Cite this article

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Public engagement with research (PEwR) has become increasingly integral to research practices. This paper explores the process and outcomes of a collaborative effort to address the ethical implications of PEwR activities and develop tools to navigate them within the context of a University Medical School. The activities this paper reflects on aimed to establish boundaries between research data collection and PEwR activities, support colleagues in identifying the ethical considerations relevant to their planned activities, and build confidence and capacity among staff to conduct PEwR projects. The development process involved the creation of a taxonomy outlining key terms used in PEwR work, a self-assessment tool to evaluate the need for formal ethical review, and a code of conduct for ethical PEwR. These tools were refined through iterative discussions and feedback from stakeholders, resulting in practical guidance for researchers navigating the ethical complexities of PEwR. Additionally, reflective prompts were developed to guide researchers in planning and conducting engagement activities, addressing a crucial aspect often overlooked in formal ethical review processes. The paper reflects on the broader regulatory landscape and the limitations of existing approval and governance processes, and prompts critical reflection on the compatibility of formal approval processes with the ethos of PEwR. Overall, the paper offers insights and practical guidance for researchers and institutions grappling with ethical considerations in PEwR, contributing to the ongoing conversation surrounding responsible research practices.

Plain English summary

This paper talks about making research fairer for everyone involved. Sometimes, researchers ask members of the public for advice, guidance or insight, or for help to design or do research, this is sometimes known as ‘public engagement with research’. But figuring out how to do this in a fair and respectful way can be tricky. In this paper, we discuss how we tried to make some helpful tools. These tools help researchers decide if they need to get formal permission, known as ethical approval, for their work when they are engaging with members of the public or communities. They also give tips on how to do the work in a good and fair way. We produced three main tools. One helps people understand the important words used in this kind of work (known as a taxonomy). Another tool helps researchers decide if they need to ask for special permission (a self-assessment tool). And the last tool gives guidelines on how to do the work in a respectful way (a code of conduct). These tools are meant to help researchers do their work better and treat everyone involved fairly. The paper also talks about how more work is needed in the area, but these tools are a good start to making research fairer and more respectful for everyone.

Peer Review reports

Introduction

In recent decades, “public involvement in research” has experienced significant development, becoming an essential element of the research landscape. In fact, it has been argued, public involvement may make research better and more relevant [ 7 , p. 1]. Patients’ roles, traditionally study participants, have transformed to become “active partners and co-designers” [ 17 , p. 1]. This evolution has led to the appearance of a multitude of definitions and terms to refer to these activities. In the UK, the National Co-ordinating Centre for Public Engagement, defines public engagement as the “many ways organisations seek to involve the public in their work” [ 9 ]. In this paper, we also refer to “public involvement,” which is defined as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” (UK Standards for Public Involvement). Further to this, the Health Research Authority (also in the UK), defines public engagement with research as “all the ways in which the research community works together with people including patients, carers, advocates, service users and members of the community” [ 6 ]; [ 9 ]. These terms encompass a wide variety of theorizations, levels of engagement, and terminology, such as ‘patient-oriented research’, ‘participatory’ research or services or ‘patient engagement’ [ 17 , p. 2]. For this paper, we use the term ‘public engagement with research’ or PEwR in this way.

Institutions have been set up to support PEwR activities. In the UK these include the UK Standards for Public Involvement in Research (supported by the National Institute for Health and Care Research), INVOLVE, and the National Coordinating Centre for Public Engagement (NCCPE). Most recently, in 2023, the UK’s largest funders and healthcare bodies signed a joint statement “to improve the extent and quality of public involvement across the sector so that it is consistently excellent” [ 6 ]. In turn, this has often translated to public engagement becoming a requisite for securing research funding or institutional ethical permissions [ 3 , p. 2], as well as reporting and publishing research [ 15 ]. Despite this welcomed infrastructure to support PEwR, there remain gaps in knowledge and standards in the delivery of PEwR. One such gap concerns the extent to which PEwR should be subject to formal ethical review in the same way as data collection for research.

In 2016, the UK Health Research Authority and INVOLVE published a joint statement suggesting that “involving the public in the design and development of research does not generally raise any ethical concerns” [ 7 , p. 2]. We presume that this statement is using the phrase ‘ethical concerns’ to narrowly refer to the kinds of concerns addressed by a formal research ethics review process, such as safeguarding, withdrawal from research, etc. Footnote 1 . To such an extent, we agree that public involvement with research is not inherently ‘riskier’ than other research activities.

Furthermore, a blanket need for formal ethical review risks demoting or disempowering non-academic contributors from the roles of consultants, co-researchers, or advisors to a more passive status as participants. Attending a meeting as an expert, discussing new project ideas, setting priorities, designing studies and, or interpreting findings does not require that we sign a consent form. Indeed, to do so clearly removes the locus of power away from the person signing and into the hands of the person who wrote the consent form. This particular risk is exacerbated when institutional, formal ethical review processes operate in complex, convoluted and obscure ways that often baffle researchers let alone members of the public.

However, we also recognize that PEwR is not without potential to do harm – something which formal research ethics review aims to anticipate and minimise. For example, a public lecture or a workshop could cause distress to audience members or participants if they learn for the first time that aspects of their lifestyle or personal history put them at higher risk of dementia. When patients are invited to join advisory panels, they may feel pressure to reveal personal details about their medical history to reinforce their expertise or legitimise their presence – especially in a room where most other people have potentially intimidating professional qualifications. Some patient groups may be exploited, if research involvement roles are positioned as an opportunity, or even a duty, and not properly reimbursed. When patients are more deeply involved in research roles, such as collecting or analysing data, they might experience distress, particularly if interacting with participants triggers their own painful or emotional memories [ 14 , p. 98]. Thus, at all levels of PEwR from science communication to embedded co-production, there is a danger of harm to patients or members of the public, and a duty of care on the part of the research team and broader institution who invited them in.

These concerns are not accessory to PEwR activities but rather exist at their heart. Following a review on the impacts of public engagement, Brett et al. conclude that “developing a wide view which considers the impact of PPI [public and patient involvement] on the people involved in the process can be critical to our understanding of why some studies that involve patients and the public thrive, while others fail” [ 1 , p. 388]. Despite the importance of these considerations, there is a stark absence of consistent guidance as to whether different forms of PEwR require formal ethical review. Nor is there, to our knowledge, any sustained attempt to provide a framework for ethical conduct of PEwR in the absence of formal review (see Pandya-Wood et al. [ 11 ]; Greenhalgh et al. [ 5 ]). This is, in part, due to there being a wide heterogeneity of practices, communities, and levels of engagement [ 8 , p. 6] that resists generalizable principles or frameworks.

The lack of frameworks about whether or how PEwR requires formal ethical review can, ironically, be a key barrier to PEwR happening. In our work as members of a university ethics review committee, we have found this lack of guidance to hamper appropriate ethical PEwR in several ways. Researchers may avoid developing PEwR initiatives altogether for fear of having to spend time or resources in securing formal ethical review (especially when this process is lengthy or resource-intensive). Likewise, they may avoid PEwR for fear that its conduction would be unethical. On the other hand, others could assume that the lack of a requirement for formal ethical review means there are no ethical issues or risks involved in PEwR.

Similarly, experts in PEwR who are not experienced with formal research ethics review may face barriers as their PEwR process becomes more elaborate, in-depth, or complex. For example, although a priority-setting exercise with members of an online community of people with depression was assessed as not requiring ethics review, the funding panel requested that formal ethics review be undergone for a follow-up exercised aimed at collecting data answering one of the priority questions identified in the previous priority-setting. It is crucial that innovations in PEwR and findings from this work are shared and yet academic teams may be unable to publish their work in certain journals which require evidence of having undergone formal ethical review. Finally, ethics committees such as ours often must rely on anecdotal knowledge to make judgements about what does or does not require formal ethical review, given the absence of standardized frameworks.

About this paper

In this paper, we report and reflect on the development of specific tools and processes for assessing the ethical needs of PEwR initiatives, as members of an ethics review committee for a large University medical school. These tools aim to delineate boundaries between research data collection and PEwR activities of various kinds, provide a self-assessment framework for ethical practice in PEwR and, overall, give people greater confidence when conducting PEwR work. We describe and critically reflect on the development of the following resources:

a taxonomy to define key terms relating to PEwR with associated resource recommendations.

a self-assessment tool to support people understanding where their planned activities fall in relation to research or PEwR.

a code of conduct for ethical conduct of PEwR (appended to the self-assessment tool).

We will, first, describe our work as part of an institutional ethics committee, the identification of a need for specific guidance, and our key assumptions; we will then describe the process of developing these tools and processes; provide an overview of the tools themselves; and reflect on early feedback received and future work needed.

Developing specific tools for PEWR in ethics

Identifying needs, goals and outputs.

The Edinburgh Medical School Research Ethics Committee (EMREC) provides ethical opinions to members of staff and postgraduate researchers within the University of Edinburgh Medical School in relation to planned research to be conducted on humans i.e. their data, or tissues. These research activities come from a wide range of disciplines, including public health, epidemiology, social science or psychology. EMREC does not review research that involves recruitment of NHS patients, use of NHS data, or other health service resources: such projects are evaluated by an NHS research ethics committee. EMREC is led by two co-directors and formed of over 38 members, which include experienced academics and academic-clinicians from a variety of disciplines. There are also 2–4 lay members who are not researchers.

EMREC receives regular enquiries about whether a specific piece of PEwR work (such as holding a workshop with people living with endometriosis to identify research priorities or interviewing HIV activists about their work during COVID-19) requires formal ethics review. In addition, often teams contact EMREC following completion of a PEwR activity that they want to publish because the journal in which they wish to publish has requested evidence of the work having undergone formal ethics approval. These enquiries are happening in the context of an institutional investment in staffing, leading to a significant degree of distributed expertise across the Medical School about diverse forms of PEwR.

Responding to this, in the summer of 2022, a Public and Patient Involvement and Engagement working group was formed by EMREC with the aim of developing new tools and processes to navigate the ethical implications of PEWR within the University of Edinburgh Medical School. The group’s original understandings were that:

PEwR is both important and skilled work that presents a unique set of ethical implications,

PEwR is a fragmented landscape where many people have relevant but different expertise and where a wide range of terminology is in use, and.

there is no existing widely-agreed framework for ethical PEwR.

This working group was designed to be temporary, lasting approximately six months. It was composed of eleven members with different degrees of seniority and disciplinary backgrounds - both members of EMREC and those from other parts of the Medical School, and other parts of the University of Edinburgh. Among these, there were both academics and PEwR experts in professional services (i.e. primarily non-academic) roles. The working group met four times (August, September and November 2022; and January 2023).

The group identified three key goals and, in relation to these, key outputs needed. The goals were: (1) help establish boundaries between research data collection (requiring an ethical opinion from EMREC) and PEwR activities of various kinds (requiring ethical reflection/practice but not a formal EMREC ethical opinion), (2) support colleagues to identify where their planned activities fell in the research-PEwR continuum and consequently the relevant ethical framework, and (3) identify ways of building confidence and capacity among staff to conduct PEwR projects. In relation to these goals, the working group initially agreed on producing the following key outputs:

A taxonomy outlining and defining key terms used in the PEwR work, with examples. While not universal or definitive, the taxonomy should help colleagues identify and label their activities and help determine the ethical considerations that would apply to conduct the work with integrity. It would also facilitate conversations between staff with varying levels and types of experience, and ensure that decisions around ethical conduct would be based on more than choice of terminology.

A self-assessment tool to provide a more systematic way to evaluate whether a given academic activity, involving a non-academic partner (organisation or individual) requires formal evaluation by a research ethics committee.

A list of resources collected both from within and beyond our institution that are relevant to the issue of ethics and PEwR and can serve as ‘further reading’ and training.

While we aimed to develop this work with a view to it being useful within the remit of the University of Edinburgh Medical School, we also understood that there was significant potential for these outputs to be of interest and relevance more widely. In this way, we aimed to position them as a pragmatic addition to existing guidance and resources, such as the NIHR Reflective Questions [ 2 ].

Our process

Across the first three meetings, the group worked together on the simultaneous development of the three outputs (taxonomy, self-assessment tool, and resources). The initial taxonomy was informed by the guidance produced by the Public Involvement Resource Hub at Imperial College London [ 10 ]. The taxonomy was developed as a table that included key terms (such as ‘public engagement’, ‘co-production’, or ‘market research’), with their definitions, examples, and synonyms. From early on, it was decided that different key terms would not be defined by the methods used, as there could be significant overlap among these – e.g. something called a focus group might be a part of a consultation, market research or research data collection.

A draft table (with just six categories) was presented in the first meeting and group members were asked to work on the table between meetings, including providing additional examples, amending language, or any other suggestions. This was done on a shared document using ‘comments’ so that contradictory views could be identified and agreements reached. The table was also shared with colleagues from outside the University of Edinburgh Medical School to capture the range of terminologies used across disciplines, recognising the interdisciplinary nature of much research.

Through this process, additional key terms were identified, such as “science communication” and “action research,” definitions were developed more fully, and synonyms were sometimes contextualized (by indicating, for example, shades of difference or usages specific to an area). Upon further work, three additional sections were added to the taxonomy tool: first, an introduction was developed that explained what terminology our specific institution used and noted that the boundaries between different terms were often “fuzzy and flexible.” In addition, the group agreed that it would be useful to provide a narrative example of how different forms of public engagement with research might co-exist and flow from one to another. To this end, a fictional example was developed where a team of clinical researchers interested in diabetes are described engaging in scoping work, research, co-production, science communication and action research at different times of their research programme. Finally, a section was also added that prompted researchers to reflect on the processes of negotiating how partners can be described in research (for example, whether to use terms such as ‘patient’ or ‘lay member’).

For the self-assessment tool, a first iteration was a table with two columns (one for research or work requiring formal ethical review and one for PEwR or work not requiring formal ethical review). The aim was for group members to fill the table with examples of activities that would fall under each category, with a view to identifying generalizable characteristics. However, this task proved complicated given the wide diversity of possible activities, multitude of contexts, and sheer number of exceptions. To address this, group members were asked to complete a case-based exercise. They were presented with the following situation: “I tell you I’m planning a focus group with some autistic folk” and asked how they would determine whether the activity would be a form of data collection for a research project (requiring formal ethical review) or another form of PEwR. Group members were asked, with a view to developing the self-assessment tool, to identify which questions they would ask to assess the activity. The replies of working group members were synthesized by one of the authors (SFW) and presented at the following meeting.

Through discussion as a group, we determined that the questions identified as useful in identifying if an activity required formal ethical review fell, roughly, under four main areas. Under each area, some indicators of activities were provided which were “less likely to need ethics review” and some “more likely to need ethics review”. The four umbrella questions were:

What is the purpose and the planned outcome of the activity? (see Table  1 for an excerpt of the initial draft answer to this question)

What is the status of the people involved in the activity? (indicators of less likely to need ethics review were “participants will be equal partners with academic team” or “participants will be advisors” and indicators more likely to require ethics approval were “participants will undertake tasks determined by academics” or “participants will contribute data or sign consent forms”).

What kind of information is being collected? (indicators of less likely to need ethics review were “asking about expert opinion on a topic” or “sessions will be minuted and notes taken” and indicators more likely to require ethics approval were “sessions will be recorded and transcribed” or “asking about participants’ personal experiences”).

What are the risks inherent in this activity? (indicators of less likely to need ethics review were “participants will be involved in decision-making” or “participants will be credited for their role in a manner of their choosing” and indicators more likely to require ethics approval were “participants’ involvement will and must be anonymized fully” or “participants have a choice between following protocol or withdrawing from the study”).

Upon further work, the group decided to modify this initial iteration in several ways leading to the final version. First, a brief introduction explaining the purpose of the tool was written. This included information about the aims of the tool, and a very brief overview of the process of formal research ethics review. It also emphasised the importance of discussion of the tool within the team, with PEwR experts and sometimes with EMREC members, depending on how clear-cut the outcome was. Second, we included brief information about what are ‘research’ and ‘public engagement with research’ with a view to supporting people who may not be familiar with how these concepts are used by ethics review committees (for example, lay co-applicants or co-researchers). Third, we included key guidance about how to use the tool, including ‘next steps’ if the activity was determined to be research or engagement. Importantly, this emphasised that none of the questions posed and indicators given were definitive of something needing or not needing formal research ethics review, but instead they should be used collectively to signpost a team towards, or away from, formal review.

Finally, while the four umbrella questions remained the same as in the previous iteration, the indicators under each were further refined. In discussing the previous version, the group agreed that, while some indicators could relate to an activity falling into either category (research or engagement) depending on other factors, there were others that were much more likely to fall under one category than the other. In other words, while no single indicator was deterministic of needing or not needing formal review, some indicators were more influential than others on the final self-assessment outcome. Thus, we divided the indicators associated with each umbrella question into two sub-groups. The more influential indicators were labelled as either “probably doesn’t need ethical review” or “almost certainly needs ethical review”. Less influential indicators were labelled as either “less likely to need ethical review” or “more likely to need ethical review.” This is shown in Table  2 .

This new format retains the awareness of the sometimes-blurry lines between research and PEwR for many activities, but also seeks to provide stronger direction through indicative activities that are more clear-cut, with a particular view to supporting early-career researchers and people new to ethics reviews and/or engagement processes.

A key concern of the group was what would happen next if a planned activity, using the self-assessment tool, was deemed as PEwR. The formal review process for research would not be available for a planned activity identified as PEwR i.e. completing a series of documents and a number of protocols to deal with issues such as data protection, safeguarding, etc. This would leave a vacuum in terms of guidance for ethical conduction of PEwR. The group was concerned that some people using the self-assessment tool might arrive at the conclusion that their planned activity was entirely without ethical risks, given that it was not required to undergo formal review. Others might be conscious of the risks but feel adrift as to how to proceed. This was a particular concern with early-career researchers and indeed established academics turning to PEwR for the first time: we wanted to facilitate their involvement with PEwR but we were also aware that many may lack experience and resources. To address this, the group decided to develop an additional output comprising a series of reflective prompts to guide researchers in planning and conducting engagement activities.

The prompts were organized under four headings. First, “Data Minimisation and Security” included information about required compliance with data protection legislation, suggestions about collecting and processing information, and ideas around ensuring confidentiality. Second, “Safeguarding Collaborators and Emotional Labour” prompted researchers to think about the risk of partners becoming distressed and suggested what things should be planned for in this regard. Third, “Professional Conduct and Intellectual Property” included advice on how to clearly manage partners’ expectations around their contributions, impact, and intellectual property. Finally, fourth, under “Power Imbalances”, the guidance discusses how researchers may work to address the inherent imbalances that exist in relationships with partners. It prompts the researcher to think about choice of location, information sharing, and authorship among others. While the Edinburgh Medical School Research Ethics Committee remains available for consultation on all these matters, as well as dedicated and professional PEwR staff, the group developed these guidelines with a view both to emphasizing the fact that an activity not requiring formal ethical review did not mean that the activity was absent of risk or did not require careful ethical planning; and to support those who may be unfamiliar with how to develop engagement activities. It was decided that this guideline should follow the self-assessment tool for clarity.

Finally, in the process of developing these outputs (the planned taxonomy and assessment tool, and the additional reflective prompts appended to the assessment tool), the group collected a large number of resources, including academic papers (e.g. Staniszewska et al. [ 16 ]; Schroeder et al. [ 13 ]; Redman et al. [ 12 ]; Fletcher-Watson et al. [ 4 ]), guidance produced by other institutions, and key online sites with information about national frameworks or policy. Among these, key resources were selected and appended to the taxonomy document. The final version of these documents can be found as appendices (Supplementary Material  1 : Assessment tool and reflective prompts; Supplementary Material  2 : Taxonomy and resources).

Further considerations and early results

The guidance and tools presented here are designed to clarify a boundary between research and engagement that is poorly defined and could cause harm if not well understood. In sharing them, we aim to facilitate researchers’ engagement with PEwR by providing familiarity with the terminology and approaches, examples, and suggesting key considerations. Most importantly, they support researchers to determine whether their planned activity should undergo a formal ethical review process or not – and if not, guides them towards ethical conduct in the absence of formal review. Reflecting on the process much of what we have explained essentially reflects a distinction between PEwR and research data collection that can be encapsulated within the idea of ‘locus of control’: namely that during PEwR the locus of control, as far as possible, sits with the engaged communities or members.

It should be noted, however, that researchers and these guidance and tools exist within a larger landscape, with added regulatory processes. Thus, researchers may need (regardless of whether their planned activity is research or engagement) to navigate additional compliance such as data protection or information security protocols and / or to consider reputational risk associated with certain topics. We are aware that the overlap of complex and sometimes obscure regulatory demands complicates the task of conducting both research and PEwR, as it requires researchers to juggle multiple procedures, documents, and approvals. This publication does not resolve all the questions that exist, but it does attempt to take a bold step towards confronting grey areas and providing systematic processes to navigate them.

The outputs described above were made available on the University of Edinburgh Medical School Research Ethics Committee intranet site under the heading “Public Engagement with Research.” While we do not collect statistics on the number of times the resources have been used, the committee has received positive feedback from people who have engaged with the documents. For example, one researcher commented that, in the process of developing an engagement activity, they had been “grappling with precisely these questions (of whether this qualifies as research, and whether it requires ethical review)” and that the documents were “quite timely and helpful. It allows me to think about these considerations in a systematic manner and it’s handy for me to send on to others as a framework for discussion should we have differing opinions.” It was this mention to the possibility of these documents being used as a framework for discussion that prompted us to write this paper as a way of sharing them beyond the University of Edinburgh College of Medicine and Veterinary Medicine (where they are already used for training early-career researchers and in the MSc in Science Communication and Public Engagement). While we think they can be useful, we also encourage potential users to adapt them to their specific contexts, with different institutions potentially establishing differing procedures or requirements. To that end, we have shared in this paper the process of writing these documents so that other people and teams may also think through them productively and creatively.

Final reflections

In developing these documents, we sought to answer a need among members of our immediate community, seeking to better assess whether an activity required formal ethical review and wanting guidance to ethically conduct PEwR work. However, we also came to realize the limitations of existing approval and governance processes. In our case, a key reason why these documents were developed is because existing formal ethical review processes would not be adequate to capture the particularities and complexities of PEwR in our large, diverse Medical School.

Looking back at the tools we developed and the feedback received, we are also satisfied with the pragmatic approach we took. There is a vast amount of resources and literature available about how to conduct PEwR, as well as a multitude of accounts and reflections both of an anecdotal and epistemological nature. Building on this conceptual work and associated principles, we sought to develop pragmatic, clear, applicable tools, without overwhelming users with a multitude of available resources and complex theory. This is, we feel, particularly applicable to contexts like ours: a large, very diverse medical school which encompasses biomedical to social science disciplines where researchers and funders have vastly differing expectations and knowledge of PEwR.

This process also led us to reflect on the practical functions of formal ethical review. Formal ethics approval provides applicants with structured resources to think and plan about their work, feedback and guidance about their plans, and—most commonly—a code and letter than can be used to easily report to journals that your research has met a specific ethical threshold. With these documents we have sought to provide some similar, pragmatic guidance to support and empower people, through a self-assessment process. This begs the question, what, if any, formal approval processes should be developed for PEwR? Are such formal processes in any way adequate to the ethos of PEwR? Would formal independent review necessarily conflict with the values of PEwR, namely the empowerment of community members as decision-makers and experts? Thus, these documents and this paper contribute to an ongoing conversation as PEwR continues to develop in frequency and sophistication in health and social care research.

Data availability

No datasets were generated or analysed during the current study.

The difference between research and public engagement is a complex one. Formal ethics approval, which is often seen as a regulatory or compliance mechanism, may not always be a good marker of this boundary, as it may ignore complex issues such as the distribution of power, the ethos of the activities, or their aims. Furthermore, different institutions use different criteria to determine what activities require ethics approval or are considered research. In this paper we reflect on the process of developing tools which we intended as pragmatic interventions that would support researchers, especially those without previous experience of PEwR to label their planned activities and understand their implications. Thus, we employ—even if not at all times comfortably—the framework that equates research with activities requiring ethics approval and PEwR with activities not requiring ethics approval.

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Literary Ethics

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Literary ethics is a concept referring to the interconnectedness of literature, literary criticism, and ethics . When talking about literary ethics nowadays we usually think of the field of ethical criticism which has been flourishing ever since the so-called “ethical turn in literary studies” in the late 1980s and 1990s (cf. Gras). However, the history of critical analysis of the connections between notions of the good, values, morals, and the resulting norms on the one hand, and literature on the other, reaches back much further than that, in fact right to the beginnings of literary criticism.

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How Indian-English fiction became an upper-caste echo chamber — underwritten by Western universities and publishers

Rajiv Thind

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Before the caste system became widespread, it existed as a theological and fictional concept in ancient Brahmin mythologies and  Puranic legends . These religious narratives often demeaned the poor and weak, condemning them to bonded labour. Other privileged castes — such as merchants, aristocrats, and landowners — saw their interests reflected in Brahminical fiction and heartily endorsed it. The victims were denied education and a voice to produce counter-narratives.

I want to explore here how caste hierarchies shape modern Indian fiction, and identify the most acclaimed Indian-English novelists and their caste backgrounds — thereby shedding light on what the Dalit scholar  Akhil Kang calls “an anthropology of the [caste] elite”. Traditional caste-based “untouchability” has effectively evolved into professional and cultural segregation.

Prior to the turn of the century, Indian-English novels did not refer to “the untouchables” as Dalits. They rarely mention the name of the eminent Dalit scholar, reformer and primary drafter of the Indian Constitution,  Dr B.R. Ambedkar (1891–1956). Trinidadian-Indian-origin author V.S. Naipaul was the first major English writer to acknowledge Dalit self-assertion.  India: A Million Mutinies Now , written in the late 1980s, opens with vibrant scenes from a massive Dalit rally in Bombay celebrating the anniversary of Ambedkar’s birth. In the book, Naipaul notes that the untouchables reject the patronising Gandhian label Harijan (God's children) in favour of the term Dalit (the oppressed). He also meets former  Dalit Panther Namdeo Dhasal, and recognises the fiery resistance in his poetry.

V.S. Naipaul attending a book launch in Paris in 1991. He would be awarded the Nobel Prize for Literature in 2001. (Photo by Sophie Bassouls / Sygma / Corbis via Getty Images)

Dalit self-assertion has come a long way since the 1980s, but  Dalit voices remain subdued in mainstream Indian media and fiction. India’s upper-caste elite controls book publishing and university English departments, making them the exclusive producers, promoters, and critics of Indian-English literature, including works in English translation.

In India, a strong command of English is essential if one wants to secure well-paid white-collar jobs in government, media, and the corporate world. Snigdha Poonam’s 2018 journalistic work  Dreamers captures the desperation of young Indians to learn English in order to get ahead in life. Poonam’s own professional journey proves the significance of English education. Like many upper-caste journalists, she worked in English-language media and published her book in Delhi, after which it was picked up by publishers in the  UK and  United States, eventually sending her to Western countries to deliver talks as another India expert.

Shantanu Gupta (right) and Ajoy Bose (left) in conversation with Snigdha Poonam (centre) during “The Craft of Political Biography” session of the ZEE Jaipur Literature Festival on 29 January 2018 in Jaipur, India. (Photo by Raj K Raj / Hindustan Times via Getty Images)

Dalit youth are denied a similar career trajectory because they lack an English-medium education and early-career support. To underline this point, some Dalit leaders have gone to the absurd lengths of erecting a temple dedicated to “the Goddess English” , hailing her as “a deity of liberation”. Worshipping at a temple is no substitute, however, for access to basic necessities and quality education. Moreover, learning English on its own won’t help when India’s academic institutions and job market are invested in sabotaging Dalit success.

Vauhini Vara is the only novelist of Dalit origin who has published in English. Her Canadian-American upbringing allowed her to develop as a journalist and writer outside the upper-caste monopoly. Until recent years, India had no  Dalit-origin journalist working in English. Curiously, none of the several multinational publishers based in Delhi has bothered to highlight the  glaring lack of representation in Indian-English fiction . Over a dozen American creative writing programs, despite their commitment to diversity and inclusion, continue to produce new batches of privileged caste Indian novelists and faculty members, perpetuating the segregation of Dalit voices.

Meanwhile, in India, the Supreme Court and English-language media are busy crafting a narrative that Dalits have developed an elite  “creamy layer” that should be excluded from affirmative action in education and government jobs. Amid the growing  unrest , this article should also serve as evidence of how even the progressive upper castes exclude Dalits when no one is looking or holding them accountable.

Dalit Studies and “artless” Dalit literature

I am not advocating for the expansion of Dalit Studies as an academic discipline, which has become a something of a global movement led by  American and  European universities. While Critical Caste Studies has its uses, we find ourselves in a peculiar situation where we have far more academic studies and expensive books on Dalit writings than there are established Dalit writers.

Some problems with the Dalit literature brand are articulated by dominant caste writers in the Hindi language. Dalit Hindi writers like Ajay Navaria and Omprakash Valmiki have discussed how their upper-caste colleagues find Dalit fiction to be artless and repetitive, focusing on slums, poverty, genocides, and victimhood. These critics urge Dalit writers to explore broader range of topics — such as Indian nationhood, LGBTIQ+ issues, Islamophobia, global human rights, and climate change.

In response,  Navaria questions why writing about the everyday oppression against millions of Dalits is not a significant topic. He also critiques the portrayal of ill-formed and degraded Dalit characters in upper-caste Hindi fiction. Navaria argues that dominant caste writers should not write novels about Dalits unless they genuinely support affirmative action in education and employment. I would add that similar ethical demands should be made of Indian-English novelists.

Teju Cole during the Edinburgh International Book Festival on 13 August 2017. (Photo by Simone Padovani / Awakening / Getty Images)

That said, despite their blind spots, the privileged caste Hindi language critics make some valid points. When we look at African American literature, it is hard not to be struck by its scope, adventurousness, and literary subversions of what  Isabel Wilkerson calls the master racial caste. For example, Teju Cole’s  Open City from 2011 is a cosmopolitan novel that bursts with intellectual and creative energy while questioning dominant narratives.

Even more adventurous is Percival Everett’s recent novel James , which retells Mark Twain’s The Adventures of Huckleberry Finn from the perspective of the caricatured and frequently infantilised escaped slave “Jim” — a character who, in Everett’s hands, is more intelligent than most of his white persecutors, dignified, and playfully subversive.

Following Everett’s lead, my advice to the critically hounded Dalit Hindi writers would be to rewrite classics of Hindi literature in which upper-caste writers have depicted Dalit characters as suffering creatures in need of upper-caste pity.

Percival Everett photographed in Pasadena, California, on 28 October 2022. (Photo by G.L. Askew II for The Washington Post via Getty Images)

But how are Dalit Hindi writers supposed to accomplish this? Who will provide them with the long-term funding and support that African American writers receive from colleges, universities, literary magazines, book publishers, and cultural institutions?

As for Dalit novelists writing in English, they barely exist. What, then, is the caste of the most acclaimed Indian-English fiction writers? I understand this question could be embarrassing and irritating for the successful writers. Even so, it is an elephant in the room that is begging for a spotlight.

The caste identity of these authors is not much of a secret. Dominant-caste surnames are easily recognisable to anyone of Indian origin. This is how literary caste networks operate in plain sight, especially in Western countries.

How the West created an upper-caste echo chamber

The Western world’s alliance with the upper-caste elite and exclusion of Dalits is an understudied phenomenon. In his  extensive research on the legal dimensions of caste , Manoj Mitta shows how colonial British laws interpreted Hindu religious scriptures to endorse caste-based privileges and disabilities. Whether through ignorance or design, Western compliance with the caste hierarchies continues. Western  politicians , businesses, and universities only need to curry favour with the upper-caste establishment to form lucrative partnerships and access India’s growing market.

Christian caste prejudice began as early as the missions of Jesuit Roberto de Nobili (1577–1656), who adopted a native lifestyle and sought Brahmin converts. In his book The Light of Asia , Christopher Harding notes that de Nobili claimed to be of the aristocrat-warrior Kshatriya caste and stopped associating with low-caste Christians. Today, a significant number of Indian Christians come from Dalit backgrounds — including 65 per cent of Catholics — yet suffer severe discrimination and remain excluded from positions of leadership. The caste bias in Indian academia and literature closely follows these well-established patterns.

An internationally recognised Indian-English literature wouldn’t exist without the support of colonial Britain and American universities for the budding novelists. An early success was Mulk Raj Anand’s  Untouchable from 1935, with its patronising tone and foggy conclusions about Dalit emancipation. Various other Indian novels have presented Dalits problematically, erasing resistant politics and religious movements such as Navayana Buddhism, the  Ravidassias ,  Ad-Dharm , and  Dalit theology . On the other hand, Western publishers have never questioned the ethics of dominant caste writers unilaterally fictionalising Dalit lives .

Suketu Mehta photographed during the Jaipur Literature Festival, 27 January 2020. (Photo by Raj K. Raj / Hindustan Times via Getty Images)

In his impassioned ode to the American immigrant experience  This Land is Our Land , Indian-American writer and professor of journalism Suketu Mehta displays his caste solidarity and pride. He declares that his caste belongs to “a subcategory of Gujarati merchants” and describes how his “caste-fellows” gather for picnics and claim their slice of America. In the United States, there are several dominant-caste organisations that restrict socialising, marriages, and professional connections within their tribe.

Mehta doesn’t see how his birth-based caste status simultaneously excludes millions of lower-caste Indians, like those who cannot become merchants without the socio-economic networks, nor can they afford to immigrate to America.

The caste demographics of Indian literature

India’s last comprehensive caste census was conducted in 1931 during the British Raj. According to estimates,  no more than 5 per cent  of the Indian population belongs to the Brahmin caste. Other top castes form as much as 10 to 15 per cent of the population. Together, these upper-caste individuals have published nearly all Indian-English literature.

There are ongoing demands for an India-wide  caste census , which various upper castes either oppose or ignore, perhaps to avoid exposing their privilege. In 2023, Bihar state’s  caste survey revealed that upper castes make up 15.5 per cent of the state’s population, only 3.66 per cent of which are Brahmins.

What about India’s most celebrated and successful writers — many of whom have taught in English departments at Indian and Western universities? Where do they fit within the landscape of India’s caste demographics?

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In the following list, I have placed a question mark next to writers whose caste is not confirmed. (I would be happy to make corrections if asked to do so by any author or their literary agent.) Every writer on this list, except one, belongs to a dominant caste. Most of these authors do not support the caste system. Many openly flaunt their leftist, progressive and “anti-Hindutva” credentials. I admire their works. Yet, it is undeniable that their upper-caste connections have allowed them to flourish in the literary world.

After the top fifteen pioneering novelists, the names are listed alphabetically based on their surnames:

• 1. R.K. Narayan — Brahmin
• 2. Mulk Raj Anand — Kshatriya/Punjabi Khatri (Within the caste hierarchy, Kshatriya is the second highest caste after Brahmin. “Khatri” is an alternative spelling used for people of similar caste in the Punjab region.)
• 3. Raja Rao — Brahmin
• 4. Khushwant Singh — Khatri (the top caste among Sikhs)
• 5. Nayantara (Pandit) Sahgal — Brahmin
• 6. Kamala Markandaya — Brahmin
• 7. Salman Rushdie — Upper-caste Muslim (85 per cent of Indian Muslims are low caste or Pasmanda. Notably, Indian publishers, universities, and media have consistently included representation from upper-caste Muslims.)
• 8. Aravind Adiga (?) — Brahmin or other dominant caste
• 9. Arundhati Roy — Brahmin father and Syrian Christian mother (Syrian Christians enjoy a high-caste status, some claiming they descend from Namboodiri Brahmins.)
• 10. Anita Desai — Brahmin heritage
• 11. Kiran Desai — Brahmin heritage
• 12. Vikram Seth — Khatri/Kshatriya
• 13. Amitav Ghosh — Kayastha (A dominant caste in West Bengal, Bihar and Uttar Pradesh. Historically, they were among the first to learn English, serving as scribes and clerks during the British Raj.)
• 14. Rohinton Mistry — Parsi by religion and ethnicity (considered a dominant caste; some of India’s wealthiest business families are Parsis, and the Parsi middle-class is quite influential in the media)
• 15. Jhumpa Lahiri — Brahmin
• 16. Chetan Bhagat (?) — Punjabi Khatri or Brahmin
• 17. Vikram Chandra (?) — Brahmin or Kshatriya
• 18. Upamanyu Chatterjee — Brahmin
• 19. Amit Chaudhuri (?) — Kayastha or Brahmin
• 20. Rana Dasgupta — British-Bengali dominant caste heritage
• 21. Shobhaa De — Brahmin
• 22. Siddhartha Deb — Kayastha
• 23. Chitra Banerjee Divakaruni — Brahmin
• 24. Avni Doshi (?) — American-born Brahmin
• 25. Ramachandra Guha — Brahmin
• 26. Keshava Guha — Brahmin
• 27. Githa Hariharan — Brahmin
• 28. Raj Kamal Jha — Brahmin
• 29. Manu Joseph — upper-caste Christian
• 30. Meena Kandasamy — a significant anti-caste writer, she is often mistaken as being of Dalit descent ( she acknowledges her marginalised “lower-caste Shudra” origin)
• 31. Deepti Kapoor — Kshatriya
• 32. Girish Karnad — Brahmin
• 33. Raghu Karnad — Brahmin
• 34. Amitava Kumar (?) — Kayastha
• 35. Hari Kunzru — Brahmin-British heritage
• 36. Megha Majumdar (?) — Kayastha or Brahmin
• 37. Anurag Mathur — Brahmin
• 38. Pankaj Mishra — Brahmin
• 39. Neel Mukherjee — Brahmin
• 40. Bharathi Mukherjee — Brahmin
• 41. Kiran Nagarkar — Brahmin
• 42. Nilanjana Roy — Brahmin
• 43. Sunjeev Sahota — British-born Punjabi Jatt
• 44. Sathnam Sanghera — British-born Punjabi Jatt
• 45. Akhil Sharma — Brahmin
• 46. Geetanjali Shree — Brahmin
• 47. Nikesh Shukla — British-born Brahmin
• 48. Preti Taneja — British-born Punjabi Khatri
• 49. Shashi Tharoor — Nair (a dominant caste in Kerala)
• 50. Kanishk Tharoor — Nair
• 51. Jeet Thayil — Syrian Christian
• 52. Amish Tripathi — Brahmin
• 53. Thrity Umrigar — Parsi
• 54. Samrat Upadhyaya — Brahmin of Nepali heritage
• 55. Madhuri Vijay (?) — Brahmin or other dominant caste

Rajiv Thind is a literary scholar, emerging fiction writer, and visiting academic at the University of Canterbury in New Zealand. He would like to thank Sumit Baudh for input on an earlier version of this article.

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Art, Cinema, Law, Money Course Guide

• Finding Books
• Journals and Databases
• Bibliographies, Dictionaries, and Encyclopedias
• Course Readings
• Class Resources

Librarian for English Language and Literature, Linguistics, Psychology, and Arabic/Persian Studies

Finding Journals and Articles

You may need to find scholarly, peer-reviewed articles for research in this class. You can find articles a variety of ways -- the first is to go directly to a scholarly journal that publishes on the topic you need. The second is to search within subject specific databases. Searching directly within a journal will give you results  only  from that journal, but you know you're looking at something directly related to your subject. Searching within databases will give you a broader spectrum of results, but some of them may be only tangentially related to your topic. 

This page has a list of journals specifically relating to the intersection between Law and Art -- each journal has a description and is linked UMD's catalog. This page also has a list of law and/or art databases -- each database has a description and a link. 

• Art, Antiquity and Law The principal aim of Art, Antiquity and Law is to inform and tell those who work in the art and antiquity world about the law governing their activities and the policies behind the law. The art and history community should be aware of the role which law plays in shaping cultural policy. Art, Antiquity and Law, besides giving an account of new legislation, case-law, public documents and official initiatives, gives considered opinions on more general points of law and practice.
• Cardozo Arts and Entertainment Law Journal Since 1982, the Cardozo Arts & Entertainment Law Journal (AELJ) has been a leader in national and international legal scholarship. It publishes a variety of works concerning the First Amendment, intellectual property, entertainment, and communications law.
• The Columbia Journal of Law and the Arts The Columbia Journal of Law & the Arts is a quarterly, student-edited publication dedicated to up-to-date and in-depth coverage of legal issues involving the art, entertainment, sports, intellectual property, and communications industries. Founded in 1975, the Journal is one of the most-cited periodicals devoted to arts law issues and features contributions by scholars, judges, practitioners, and students.
• International Journal of Cultural Property International Journal of Cultural Property provides a vital, international, and multidisciplinary forum for the broad spectrum of views surrounding cultural property, cultural heritage, and related issues. This peer-reviewed journal publishes original research papers, case notes, documents of record, chronicles, conference reports, and book reviews.
• Journal for Art Market Studies The Journal for Art Market Studies is an academic peer-reviewed open-access journal for current international research on the art market of all periods.
• Journal of Law and Society The Journal of Law and Society presents an interdisciplinary approach to socio-legal studies. It covers issues from a range of legal cultures, involving theory and relevant data and progressive policy of cross-cultural interest. Challenging, authoritative, and topical, the journal appeals to legal scholars as well as sociologists, criminologists, and other social scientists.
• Law, Culture, and the Humanities This interdisciplinary journal publishes high quality work at the intersection of scholarship on law, culture and the humanities. It provides an outlet for people engaged in interdisciplinary, humanistically oriented legal scholarship. The mission of Law, Culture and the Humanities is to encourage dialogue across and among these fields about issues of interpretation, identity and values, authority, obligation, justice and law’s place in culture.
• Law, Text, Culture Law Text Culture is a transcontinental, open access, peer-reviewed interdisciplinary journal which aims to produce fresh insights and knowledges about law and jurisprudence across three interconnected axes: 1. Politics: engaging the relationship of force and resistance; 2. Aesthetics: eliciting the relationship of judgment and expression; 3. Ethics: exploring the relationship of self and other.
• Law and Humanities Law and Humanities is a peer-reviewed journal, providing a forum for scholarly discourse within the arts and humanities around the subject of law. For this purpose, the arts and humanities disciplines are taken to include literature, history (including history of art), philosophy, theology, classics and the whole spectrum of performance and representational arts. Law and Humanities is principally concerned to engage with those aspects of human experience which are not empirically quantifiable or scientifically predictable.
• Law and Literature Law and Literature was founded in 1988 as the journal of the Law and Literature movement. It has since become the leading interdisciplinary law journal directed to law and the arts, with a specific focus on critical theory, historical inquiry, and literary expression in its diverse media and forms. It welcomes articles examining intersections between literary and legal traditions, and provides a forum for reconsidering disciplinary boundaries and categories.
• Yale Journal of Law and the Humanities Grounded in awareness that cutting-edge interdisciplinary exploration is crucial to a fuller understanding of both the law and the world at large, YJLH provides a unique intellectual arena to scholars of several disciplines.
• Art Abstracts A Comprehensive Resource for Art Information featuring indexing and abstracts from an international array of publications, this database is a comprehensive resource covering fine, decorative and commercial art, as well as photography, folk art, film, architecture and much more. Over 600 periodicals dating back to 1984, including 280 peer-reviewed journals Indexing and abstracts of over 13,000 art dissertations Indexing of almost 200,000 art reproductions. Time span: 1984-present.
• ARTbibliographies Modern (ABM) Premier source of information on modern and contemporary arts dating from the late 19th century onwards, and including photography. Includes citations and abstracts to English and foreign-language journal articles, books, exhibition catalogs, dissertations, and reviews of books and exhibitions. Covers all aspects of modern and contemporary art from the late 19th century to the present including painting, drawing, sculpture, graphic arts, photography, performance and installation art, computer and electronic art, conservation and crafts. 1974 to the present, with some entries dating to the late 1960s.
• Art Full Text Researchers are able to track the careers of artists and review their materials and methods, and can find books by and about artists, as well as interviews, profiles and much more. Indexing of nearly 200,000 art reproductions provides examples of styles and art movements, including works by emerging artists. It also includes indexing of over 13,000 dissertations. Full-text articles from more than 300 periodicals dating back to 1995; High-quality indexing and abstracts for over 600 periodicals dating as far back as 1984, including 280 peer-reviewed journals; Indexing and abstracts for over 13,000 art dissertations; Indexing of nearly 200,000 art reproductions; A database-specific thesaurus.
• HeinOnline Foreign and International Law Resources In-depth coverage of publications from the American Society of International Law and the prominent Yearbooks from around the world, as well as the Hague Permanent Court of International Justice series and the publications of dozens of other highly-respected publishers. Part 1 includes international yearbooks and serials, Part 2 contains U.S. Law Digests, Part 3 consists of international tribunals and judicial decisions and Part 4 includes other significant works relating to foreign and international law.
• HeinOnline Law Journal Library Full-text images of over 1,100 journals back to issue 1 of volume 1 of the each title. The goal of the Hein company is eventually to scan every law review title ever published. To see the current holdings of HeinOnline, click the "Collection Index" link on the top left-hand side of the screen.
• Westlaw Campus Research Westlaw Campus Research is a collection of thousands of law, news, and business publications Law: The heart of Westlaw Campus Research is the full text of all federal and state U.S. cases. The collection also includes other legal primary sources and many secondary sources, including over 800 law reviews and journals. News: The collection contains the full text of hundreds of newspapers, newswires, newsletters, broadcast transcripts, magazines, and trade journals from the US and around the globe. Business: The collection contains company information from a variety of sources, including Westlaw’s Company Investigator system.
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Research Ethics

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• Description
• Aims and Scope
• Editorial Board
• Abstracting / Indexing
• Submission Guidelines

Research Ethics provides a platform for sharing experiences and analysis of ethical issues that are related to the design, conduct, impact and oversight of research. Through open and transparent narrative and analysis of ethical issues in research, it serves to raise awareness, challenge assumptions and help find solutions for complex ethical issues.

Ethical issues are not limited to a specific discipline or type of research. The Editors welcome submissions from any research field (for instance, biomedical, social science, environmental, information technology, or the arts) and a broad range of methodological approaches (for instance, clinical trials, animal experimentation, qualitative studies, laboratory or desk-based research).

Some examples of the topics addressed in Research Ethics include:

• Ethical issues related to the inclusion of vulnerable populations in research
• Ethics dumping
• Benefit sharing
• Ethical issues related to social media research
• Research integrity and research misconduct
• The education and training of researchers and ethics reviewers
• The development and implementation of governance mechanisms

In addition to these applied ethics issues, the journal also welcomes original theoretical papers that contribute to the debate around the normative underpinnings or ethical frameworks for research ethics.

Research Ethics publishes original papers and review articles as well as informative case studies and offers a home for submissions from authors from around the world. The quality of submitted articles is evaluated independently by double-blind peer review. This journal is a member of the Committee on Publication Ethics (COPE).

Research Ethics is aimed at readers and authors who are interested in ethical issues associated with the design and conduct of research, the regulation of research, the procedures and process of ethical review and issues related to scientific integrity. The journal aims to promote, inspire, host and engage in open and public debate about research ethics on an international scale and to contribute to the education of researchers and reviewers of research.

Research Ethics offers a home for submissions from authors from around the world and publishes original papers and review articles as well as informative case studies. The quality of submitted articles is evaluated independently by double-blind peer review.

• Clarivate Analytics: Emerging Sources Citation Index (ESCI)
• Directory of Open Access Journals (DOAJ)
• ERIC (Education Resources Information Center)

Manuscript Submission Guidelines: Research Ethics

This Journal is a member of the Committee on Publication Ethics .

Please read the guidelines below then visit the Journal’s submission site  http://mc.manuscriptcentral.com/rea  to upload your manuscript. Please note that manuscripts not conforming to these guidelines may be returned.

Only manuscripts of sufficient quality that meet the aims and scope of  Research Ethics  will be reviewed.

All articles published in Research Ethics are published fully open access under a Creative Commons licence and available worldwide, with readers having barrier-free access to the full-text articles immediately upon publication. From 1st January 2024, an article processing charge (APC) is levied on all article types that are published in the journal.

For authors that are currently eligible for an  Open Access Agreement at your institution with Sage , your article will be published at either no direct cost to you or at a deeply discounted rate, depending on the terms of the agreement.

Authors based at institutions in developing countries may also be eligible for an APC waiver, please see our  website page on Gold Open Access Article Processing Charge Waivers  for further information. Please refer to  our page regarding our partnerships around the world  if you would like to know more about the Research4Life initiative.

For authors not eligible for a Sage Open Access Agreement, the APC is USD $500.

• Open Access
• Article processing charge (APC)
• What do we publish? 3.1 Aims & Scope 3.2 Article types 3.3 Writing your paper
• Editorial policies 4.1 Peer review policy 4.2 Authorship 4.3 Acknowledgements 4.4 Declaration of conflicting interests 4.5 Research ethics and patient consent 4.6 Clinical trials
• Publishing policies 5.1 Publication ethics 5.2 Contributor's publishing agreement
• Preparing your manuscript 6.1 Main File 6.2 Title Page 6.3 Formatting 6.4 Language 6.5 Artwork, figures and other graphics 6.6 Supplementary material 6.7 Reference style 6.8 English language editing services
• Submitting your manuscript 7.1 ORCID 7.2 Title, keywords and abstracts 7.3  Information required for completing your submission 7.4  Permissions
• On acceptance and publication 8.1 Sage Production 8.2 Online publication 8.3  Promoting your article
• Further information

1. Open Access

Research Ethics is an open access, peer-reviewed journal. Each article accepted by peer review is made freely available online immediately upon publication, is published under a Creative Commons license and will be hosted online in perpetuity. 

For general information on open access at Sage please visit the Open Access page or view our Open Access FAQs.

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2. Article processing charge (APC)

For authors not eligible for a Sage Open Access Agreement, the article processing charge (APC) is USD $500.

3. What do we publish?

3.1 Aims & Scope

Before submitting your manuscript to Research Ethics , please ensure you have read the  Aims & Scope .

3.2 Article Types

Research Ethics  publishes original articles and review articles as well as informative case studies on the ethical issues associated with the design and conduct of research, the regulation of research, the procedures and process of ethical review, and issues related to scientific integrity. The journal encourages the submission of the following types of manuscripts:

• Original articles: these manuscripts present original empirical content and/or an original theoretical perspective. Submissions that present original empirical content should not exceed 12,000 words (including references). Submissions that present an original theoretical perspective should not exceed 6,000 words (including references). Longer manuscripts may occasionally be considered at the discretion of the Editors.
• Topic Pieces: these articles are intended to form a snapshot of, or perspective on, contemporary thinking on a topic or issue in research ethics or research integrity. Submissions of topic pieces should be no longer than 2,000 words (including references). 
• Case studies: these articles provide examples of real-world ethical challenges in research or research ethics review, as well as real-world case studies in research integrity or research misconduct. Case studies should include ethics analysis of the identified challenges and, where possible, recommendations for dealing with them. Submissions of case studies should be no longer than 3,000 words (including references).
• Review articles: these articles address key issues in research ethics or integrity with a focus on under-researched topics. Rather than introducing new material, review articles offer critical analysis of specific issues in particular areas with significant referencing to existing published literature. Review articles should be between 3,000 and 6,000 words (including references).

3.3 Writing your paper

The Sage Author Gateway has some general advice and on  how to get published , plus links to further resources. Sage Author Services also offers authors a variety of ways to improve and enhance their article including English language editing, plagiarism detection, and video abstract and infographic preparation.

3.3.1 Make your article discoverable

When writing up your paper, think about how you can make it discoverable. The title, keywords and abstract are key to ensuring readers find your article through search engines such as Google. For information and guidance on how best to title your article, write your abstract and select your keywords, have a look at this page on the Gateway: How to Help Readers Find Your Article Online .

4. Editorial policies

4 .1 Peer review policy

Manuscripts submitted for publication in Research Ethics are subject to anonymised peer review.

Submissions are initially reviewed by the editors, who determine whether the submission meets the basic guidelines (e.g. addresses a topic relevant to research ethics or research integrity, is written in English, and is sufficiently understandable). If so, the editors will consult among themselves to determine if the submission, based on its quality, should go on to peer review. Submissions passing this first level of review will be assigned to at least two peer reviewers with the appropriate expertise. The reviewers assess submissions based on scholarly quality, relevance, timeliness, novelty, importance, engagement with the relevant literature, and similar factors. Upon receipt of the peer review responses, the editors will decide whether the manuscript should be rejected, or accepted with or without required revisions.

Research Ethics operates a strictly fully anonymous peer review process in which the reviewer’s name is withheld from the author and, the author’s name from the reviewer. The reviewer may at their own discretion opt to reveal their name to the author in their review, but our standard policy practice is for both identities to remain concealed. The desired turnaround time for manuscripts is a maximum of eight weeks from submission to initial decision. If the manuscript is accepted for publication, the editors reserve the right to make minor adjustments (e.g. grammar, tone) and, if necessary, to shorten the manuscript without changing the meaning.

4.2 Authorship

All parties who have made a substantive contribution to the manuscript should be listed as authors. Principal authorship, authorship order, and other publication credits should be based on the relative scientific or professional contributions of the individuals involved, regardless of their status. A student is usually listed as principal author on any multiple-authored publication that substantially derives from the student’s dissertation or thesis. See also the COPE discussion document on authorship, available here .

Please note that AI chatbots and Large Language Models (LLMs), such as ChatGPT, do not currently satisfy our authorship criteria. Use of any AI chatbot or LLM in helping prepare a manuscript for submission should be clearly indicated in the manuscript, including which model was used and for what purpose. Please use the methods or acknowledgements section, as appropriate. For more information see the  Sage policy on Use of ChatGPT and Generative AI .

4.3 Acknowledgements

Contributors or advisors who do not meet the criteria for authorship can be listed in an Acknowledgements section. Examples of those who might be acknowledged include a person who provided purely technical help, general support or feedback on an early draft. Please ensure that persons who are acknowledged have given permission for mention in the article and upload their confirmation (as supplementary materials) at submission.

4.3.1 Third party submissions

Where an individual who is not listed as an author submits a manuscript on behalf of the author(s), a statement must be included in the Acknowledgements section of the manuscript and in the accompanying cover letter. The statements must:

• Disclose this type of editorial assistance – including the individual’s name, company and level of input
• Identify any entities that paid for this assistance
• Confirm that the listed authors have authorized the submission of their manuscript via third party and approved any statements or declarations, e.g. conflicting interests, funding, etc.

Where appropriate, Sage reserves the right to deny consideration to manuscripts submitted by a third party rather than by the authors themselves .

4.3.2 Writing assistance

Individuals who provided writing assistance, e.g. from a specialist communications company, do not qualify as authors and so should only be included in the Acknowledgements section. Authors must disclose any writing assistance – including the individual’s name, company and level of input – and identify the entity that paid for this assistance.

It is not necessary to disclose use of language polishing services.

4.4 Declaration of conflicting interests

It is the policy of Research Ethics to require a declaration of conflicting interests from all authors enabling a statement to be carried within the paginated pages of all published articles.

The declaration of conflicting interests must be provided at the submission stage in two ways:

• Authors should provide a full statement disclosing the existence of any financial or non-financial interest within the title page and/or cover letter, which is not sent to reviewers, to detail these and to declare any potential conflicts of interest to the editor.
• Authors should provide a minimal statement (either "The authors declare the existence of a financial/non-financial competing interest" OR "The authors declare no competing interests") within the anonymised manuscript. The minimal statement will be shared with peer-reviewers and must not include any information which may enable the disclosure of author identities.

In addition to any declarations in the submission system, all authors are required to include a ‘Declaration of Conflicting Interests’ statement at the end of their published article using one of the following standard sentences:

• The authors declare the following competing interests.
• The authors declare no competing interests.

For guidance on conflict of interest statements, please see Sage’s Publishing Policies and the ICMJE recommendations here .

4.5 Research ethics and patient approvals

It is the policy of Research Ethics to require a declaration about research ethics approval enabling a statement to be carried within the paginated pages of all published articles. To ensure anonymous peer-review, please include these details on the title page of your submission. This should include the name of the ethics committee that approved the study and, where possible, the date of approval and reference number of the application.

Should research ethics approval not be relevant/required for your study/article, please include a statement to this effect at the submission stage, along with any accompanying evidence if possible (e.g. relevant link to policy position of institution or legal framework clarifying ethics approval is not required or expected for the kind of study/article being submitted). The following standard sentence can be used:

• The authors declare that research ethics approval was not required for this study.

4.5.1 Medical research

Medical research involving human participants or data must be conducted according to the World Medical Association Declaration of Helsinki .

Submitted manuscripts should conform to the ICMJE Recommendations for the Conduct, Reporting, Editing, and Publication of Scholarly Work in Medical Journals , and all articles reporting on studies involving human participants must state that the relevant ethics committee provided ethics approval (or waived its requirement). Please ensure that you have provided the full name and institution of the ethics committee, in addition to the approval number and date of approval. Please include these details on the title page of your submission. For research articles, authors are also required to state in the methods section whether participants provided informed consent and whether the consent was written or verbal.

Information on informed consent to report on individual cases or case series should be included in the manuscript text. A statement is required regarding whether written informed consent for patient information and images to be published was provided by the participant(s) or a legally authorized representative.

Please also refer to the ICMJE Recommendations for the Protection of Research Participants

 4.5.2 Non-medical research involving humans and human data

All manuscripts reporting studies with humans or human data, including studies that involve primary collection of personal data such as surveys or interviews, must state the relevant ethics committee provided (or waived) approval.

If ethics approval was obtained, please provide the name(s) of the ethics committee(s)/IRB(s) plus the approval number(s)/ID(s). If the study received exemption from ethics approval, please provide the name(s) of the ethics committee(s)/IRB(s) or other authorized body and the reason for exemption. If ethics approval was not sought for the present study, please specify why it was not required and cite the relevant guidelines or legislation where applicable, for the benefit of an international readership. Please include these details on the title page of your submission.

For empirical research articles, authors are also required to state in the methods section whether participants provided informed consent and whether the consent was written or verbal.

If you are unsure whether ethics approval is required for your study, please refer to this Editorial .

4.5.3 Animal studies

All manuscripts reporting on studies with animals must provide details of the relevant research ethics approval (or waiver). Please include these details on the title page of your submission.

4.6 Clinical trials

Many Sage journals conform to the  ICMJE requirement  that clinical trials are registered in a WHO-approved public trials registry at or before the time of first patient enrolment as a condition of consideration for publication. The trial registry name and URL, and registration number must be included at the end of the abstract.

Further to the above, other Sage journals may consider retrospectively registered trials if the justification for late registration is acceptable, consistent with the  AllTrials campaign . The trial registry name and URL, and registration number must be included at the end of the abstract.

5. Publishing Policies

5.1 Publication ethics

Sage is committed to upholding the integrity of the academic record. We encourage authors to refer to the Committee on Publication Ethics’ International Standards for Authors and view the Publication Ethics page on the Sage Author Gateway .

5.1.1 Plagiarism

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The role of ethics in science: a systematic literature review from the first wave of COVID-19

Alessia maccaro.

1 School of Engineering, University of Warwick, Coventry, CV47AL UK

2 Institute of Advanced Study, University of Warwick, Coventry, CV47AL UK

Davide Piaggio

Silvio pagliara, leandro pecchia.

3 European Alliance of Medical and Biological Engineering and Science (EAMBES), Leuven, Belgium

4 IUPESM, York, UK

Associated Data

The results of the systematic literature search are available by contacting the authors upon reasonable request.

This paper proposes a systematic literature review on ethics and CoviD-19, aiming to understand the impact and the perception of the pandemic during the first wave (January-June 2020) and the consequences one year later. PubMed was systematically searched up May 2020 to identify studies that took into consideration various ethical issues that have been arising from the Covid-19 outbreak. The eligibility of the papers was determined by two authors, who screened the results mediated by a third author. In order to facilitate the screening, the titles were divided into five sub-thematic macro-areas, namely allocation , policy , specialist , clinical trials , and technology and, when possible, per geographical area. Specifically, a posteriori, we decided to focus on the papers referring to policies and technology , as they highlighted ethical issues that are not overused and worthy of particular attention. Thus, 38 studies out of 233 met our inclusion criteria and were fully analysed. Accordingly, this review touches on themes such as fairness, equity, transparency of information, the duty of care, racial disparities, the marginalisation of the poor, and privacy and ethical concerns. Overall, it was found that despite the increased awareness of interdisciplinarity and the essential reference to ethics, many scientific articles use it with little competence, considering it only a "humanitarian" enrichment. In fact, as we understand, reflecting a year after the outbreak of the pandemic, although Covid-19 is leading scientists to increasingly recognise the importance of ethical issues, there is still a lot of confusion that could be helped by establishing international guidelines to act as a moral compass in times of crisis.

Supplementary information

The online version contains supplementary material available at 10.1007/s12553-021-00570-6.

The spread of COVID-19 begot what the World Health Organisation (WHO) defined a “pandemic” [ 1 ], an emergency condition that has often been compared to other dramatic events in history (e.g., the Spanish flu in 1918). However, on closer inspection, COVID-19 can be regarded as an unprecedented event with its own specificity.

During the first months of the pandemic, the numerous emerging issues were deeply interwoven with ethics, as it is unanimously recognized by the works of politics, medicine, and science. The interdisciplinarity of such works and their continuous and necessary reference to ethics reinforce the belief that bioethics, i.e., a "bridge" between different fields of knowledge, looks more and more "towards the future" [ 2 ]. In fact, in the first few months, the contributions of National Ethics Committees, International Organizations, National Bodies and Professional Association to this topic [ 3 ] were numerous, very rapid, and accompanied a very heated debate on ethical implications between the population and experts from various backgrounds. Nonetheless, the continuous reference to the word “ethics” in the first publications after the declaration of COVID-19 pandemic [ 4 – 7 ] highlighted the need to clarify the most relevant ethical problems related to the scientific community. Hence, it was decided to focus on and deepen the subjects that aroused the interest of specialists the most. Specifically, existing works of reconstruction and/or comparison among national and international documents on the relationship between ethics and COVID-19 were not taken into consideration, to avoid delving into or discoursing about already exhaustively discussed topics.

Consequently, a systematic literature review was opted for. Such review was conducted by an interdisciplinary working group, comprising biomedical engineers and bioethicists, following a multidisciplinary approach, which overcomes the outdated Cartesian model of the separation of knowledge into “silos” of disciplines [ 8 , 9 ]. To facilitate the screening process, the papers were grouped by macro areas that were pinpointed through a thematic analysis [ 10 ], as explained in the methods. In particular, it was decided to analyse only the themes related to policy, technology, resource allocation, and low- and middle-income countries (LMICs) as they fall within our competences and seem to underline relevant ethical questions, which are not always adequately or exhaustively discussed. However, the theme of resource allocation was excluded a priori, because it is a trite topic, currently “abused”, on which anyone expresses their opinion independently from their level of expertise and knowledge. Moreover, many papers, which had a reference to ethics in the title, but that, in fact, did not deal with analysing the ethical implications of the investigated issues, were excluded. In fact, the ultimate purpose of this work was to understand the role that scientists recognize in ethics and the problems related to it: is it seen as a “humanitarian” addition to technical issues or as a structural element and perspective from which to analyse specialistic issues?

Therefore, this paper reports a collection of the most relevant and less conventional ethics challenges related to COVID-19 published in peer-reviewed journals indexed in PubMed, analysed through our multidisciplinary lens. These ethical issues, which emerged during the first wave of the pandemic, were then rediscussed a year later, in order to assess whether the first bioethical perspectives related to COVID-19 were biased by the close succession of the events being analysed, or they were detached enough, and the raised issues remain current a year on.

Systematic literature review

Given the large number of papers and documents that have been and are currently being published since the start of the pandemic, we decided to conduct a systematic literature review. PubMed was selected as the only database to identify all the contributions published from 01/01/2020 up to 19/05/2020 responding to the topics of COVID-19 and ethics. The search string was constructed with the following terms combined with the Boolean operators AND/OR: “ethics”, “ethical”, “bioethics”, “COVID”, “sars cov 2”, “coronavirus” ((ethics OR ethical OR bioethics) AND (COVID OR sars cov 2 OR coronavirus)). We judged eligible only the papers with full text available and in English. In order to facilitate the clustering and further screening of the retrieved articles, they were divided into the most recurring themes and per geographical area. To this regard, the countries were grouped according to the following macro groups, based on the retrieved papers: North America, Europe, LMICs (e.g., Tunisia), Asia, and Israel. Particular attention was dedicated to the contributions regarding LMICs. Finally, only the paper pertaining to our field of expertise, i.e., technologies and policy, made it through the final selection. During this process, two authors independently screened all the titles and abstracts for eligibility. Full texts were considered if the selection was unclear. A third author reviewed and checked the results of the screening search. Any discrepancy was resolved by discussion among all the authors. All the relevant papers were analysed, summarised and coded to facilitate the reading.

Figure  1 shows the electronic database search and the selection process. Only 38 papers out of the initial 233 resulted eligible to be included in our study, which focuses on technology and policy. Figure  2 shows the division in macro groups and Fig.  3 the division per geographical area, when applicable. Online Resource 1 presents all the selected papers organised by recurring themes.

The flowchart of the systematic literature review

The distribution of the articles in 5 macro-areas

The distribution of the articles per geographical area

The 5 pinpointed macro groups of specific works on ethics and COVID-19 were: Policy, Resource allocation, Specialists, Clinical trials, and Technology. The theme of policies, i.e., of the public responses to the crisis, is the one that piques the scientists’ interests the most, according to our review. In this regard, as already mentioned, our review is not exhaustive and does not aim at including all the political guidelines of the various countries, because its hermeneutical horizon [ 11 ] is the point of view of science. Notwithstanding, it was possible to identify a series of specific works on different countries, which allowed comparisons between different areas of the world: LMICs, Asia, Europe, and North America.

The theme of resource allocation is also extremely well-liked. In fact, the first wave of the pandemic caused a scarcity of resources, globally, without any distinction: from personal protective equipment (PPE) to medical devices (MDs) (e.g., ventilators, respirators), beds, drugs for COVID-19 patients or patients suffering from other pathologies, health personnel, and COVID-19 tests. Most specifically, this situation of emergency abruptly showed the lack of competent ad-hoc bodies. This begot extremely heterogeneous approaches to ethics by different individuals, regardless their competence in ethics.

Among the retrieved publications, there were also numerous articles on ethics and COVID-19 written by specialists from various medical fields (e.g., geriatrics, psychiatry, surgery, oncology, and dentistry). Other publication focuses on all healthcare workers (HCWs), such as nurses and midwives, who experienced profound difficulties in this particular historical moment, the common denominator being allocation problems.

A significant number of works was related to clinical trials, in particular concerning vaccines and drugs, dealing with detecting the widespread condition of researchers who had to readdress the scopes of their research, always respecting high ethical standards and safeguarding the testers.

Finally, the last area is that of technology for COVID-19 (e.g., eHealth) and all the related ethical issues.

Discussions

The duality of trust: on the trustworthiness of governments and public trust.

Most of the articles included the topic of infodemic , i.e., “an over-abundance of information – some accurate and some not – that makes it hard for people to find trustworthy sources and reliable guidance when they need it” [ 12 ]. Misinformation circulating through global digital social networks in the first months of this pandemic was focused on trust in governments and policy makers [ 13 – 15 ], questioning the principles of legitimacy and responsibility related to information verification and sharing.

But who was the source of such disinformation?

Larson [ 15 ] claimed that it is was the governments who repressed information hoping to calm anxious publics, as it happened in Iran [ 15 , 16 ] or in China, where healthcare workers, who told the truth about the spread of the virus and the scarcity of resources, were looked at as “whistle-blowers” and forced to withdraw their declarations [ 17 ]. Moreover, some governments deliberately released supposedly reassuring misinformation, risking undermining their own credibility and their abilities to help people counter real health threats. According to Limaye et al. [ 13 ], there is a need for joint action between government agencies and social media companies for fact-check and even removal of false or outdated information. On the other hand, according to Bastani and Bahrami [ 16 ], there is the need of an active and effective presence of health professionals and authorities on social media, due to the poor legal supervision of online content.

Low-quality research contributed to this misinformation, too. In fact, the high demand for information caused an acceleration in reporting scientific results, with many journals publishing without any peer-review and offering open-access to everyone. A proxy for the high number of low-quality research on COVID-19 is also the unprecedented high number of retracted papers. To this regard, we searched for papers on COVID-19 or SARS-Cov-2 and the previous epidemics/pandemics (i.e., avian flu, swine flu, MERS) both on the Retraction Watch Database and OvidSP. As a result, as of May 2021, 124 out of 264,530 papers on COVID-19 (4.68 retractions per 10,000) were retracted, compared to 1.16 per 10,000 papers concerning the previous pandemics/epidemics.

Apart from being unethical, reporting poor quality outcomes is a kind of research misconduct [ 18 ] and inaccuracy. This could also have other consequences, for example exacerbating stigma and discrimination against particular populations [ 19 ]. In fact, Chowkwanyun and Reed [ 20 ], analysing the information circulated in the media in Wisconsin and Michigan on the high percentage of black people affected by Coronavirus, argued that there is always the need for contextualisation unless we want to foster harmful myths and misunderstanding, which undermine the goal of eliminating health inequities. The fear of stigmatization towards specific groups of people is likely to worsen if they are individuals. In this case, the ethical dilemma is the balance between personal and collective interests.

In hindsight, the public health measures that have been implemented can be of different types. Sulmasy and Veatch [ 21 ] identifies four of them:

• Contact tracing through the self-reporting of recent close interactions by people known to be infected with COVID-19. In this regard, Luo et al. [ 22 ] reported the example of an online questionnaire that circulated in China as an internet approach in COVID-19 participatory surveillance.
• More "draconian" health measures: new surveillance technologies that employ facial recognition, security cameras, and phone GPS monitoring could attempt to identify everyone who spent at least fifteen minutes within six feet of every infected individual. Each contact could be forcibly quarantined. In this regard, [ 23 ] underlined that apps could also be used as a preventive approach. However, as Vokinger et al. [ 24 ] affirmed, trustworthiness and integrity of contact tracing apps should be assessed with a framework. A review of the tracing apps for the management of COVID-19 can be found in [ 25 ], where the authors underlined that among the advantages there were the increase of personal freedom, of personal feelings of safety, and the improvement of the management of the quarantine. However, governments should implement policies to outline requirements for these apps and should safeguard privacy, access, transparency, the protection and use of these data [ 24 , 25 ]. In particular, Santow [ 26 ] underlined the need for a legal framework to regulate artificial intelligence and data sharing, as they can be the cause of discrimination and violation of human rights.
• Voluntary contact tracing: it relies on the self-led contact tracing. However, it is not perfect because patients might not remember all their recent contacts.
• The public naming of infected individuals: in this regard, Sulmasy and Veatch [ 21 ] described the case of the Prestigious University, in which the communication via email about the testing positive of a staff member raised a heated debate regarding the request to reveal the identity of the subject in order to maximize public health benefit and slow the spread of the virus. One of the authors argued that this could breach confidentiality and be harmful to the patient's privacy, who is free to decide whether to make a voluntary disclosure. However, another author believed that the confidentiality breach is morally mandatory to decrease the risk of contagion for other members of the University, because the duty towards the community has priority over the right of confidentiality. This is also discussed by Persad and Emanuel [ 27 ], who reported the proposal of some states (i.e., Chile, Germany and the UK) to implement “certifications of immunity” or “immunity passports” for those who had COVID-19 or who will have received the vaccine in the future. In line with the principle of the “least restrictive alternative” to achieve public health objectives, the author believe that this tracking measure is not unethical and cannot be compared to the yellow star that the Nazis forced the Jews to wear, because it is not a form of discrimination. However, it needs careful implementation and scientific support to be ethical in practice.

Another category of individuals who place the interests of society before their own is that of frontline healthcare workers (HCWs) who are forced to work in precarious conditions at their personal risk [ 28 ]. However, for them there is also another ethical dilemma: that of protecting, together with one's own health, also one's family and loved ones, which often clashes with the duty to treat patients, sometimes in the absence of PPE [ 29 , 30 ]. According to McConnell [ 31 ], there are several factors that adjust the burden of protecting one's family. The authors argued that the moral demands of "Samaritanism" (i.e., one should go out of one's way to help someone else, if it entails a little cost to oneself) do not imply that HCWs take on the risks and burdens associated with treating COVID-19 to save several lives. Likewise, Thomas et al. [ 30 ] denounced the low quantity and quality of PPE and the inadequacy of the related guidance issued by Public Health England. Moreover, he appealed to the precautionary principle and praised the ethical framework of Beauchamp and Childress [ 32 ] that encourages to counterbalance beneficence with non-maleficence. Always according to Thomas JP, political leaders have the moral duty to be open and honest, when informing all frontline HCWs of their own personal risks in caring for COVID-19 patients.

Nonetheless, as in all the aspects of life, economical evaluations cannot be excluded. Hilsenrath [ 33 ] presented a very sensitive issue, that of confronting the medical duty to save lives and the reasoning of economists, who invite people to make decisions on appropriate costs. The author lucidly underlined that although the issue is often bypassed by political leaders, especially Americans, it should be faced by considering an ethical balance, certainly painful, between the ethical and economic damage that countries are experiencing in this historical moment.

Overall, what is required from governments is trust. People place their trust, their lives, health, and economic situation in a sensible and transparent decision-making of governments. Therefore, as Thomas et al. claimed, "it is a reasonable expectation to hold our modern governments to the corresponding standards of our modern health professionals: specifically, transparency in decision-making and the duty of candidate" [ 30 ]. Similarly, Lewnard and Lo [ 34 ] sustained that policymakers maintain the public's trust through the use of evidence-based interventions and fully transparent fact-based communication. To give an example of this, the author also reported on mathematical modelling of the viral transmission under different scenarios to generate evidence of the efficacy of social distancing interventions.

On the other hand, Chaari and Golubnitschaja [ 35 ], supporter of 3P (predict, prevent and personalise) medicine, proposed “real-time” monitoring based on randomized laboratory tests as a source of evidence. However, this clashed with the problem of the lack of tests and the discrepancy between officially recorded and real infection cases. In fact, this could lead to incorrect political decisions heavily influencing the future of a country (e.g., a long-term economic recession due to over-protection of the population, or a post-containment pandemic rebound due to an under-protection of the population). Furthermore, all the measures required from governments (i.e., testing, screening, contact tracing, social distancing, travel restriction) must be as inclusive as possible in particular with vulnerable communities (i.e., homeless, those without insurance or employment, disabled, immigrant, prisoners) [ 14 , 34 ]. This also means being aware that the use of technology to combat the spread of COVID-19 could exacerbate racial, socioeconomic and geographic disparities for populations that lack access to reliable internet access, devices or technological literacy [ 36 ]. Moreover, during the pandemic, the benefits of technologies that allow relationships beyond social distancing have increasingly been experienced and could be a valid assistance tool for the elderly [ 37 ] and favour the communication of hospitalised patients with their families [ 36 ]. This response should also involve millennials and Generation Z more [ 38 ], as, despite the negative stereotypes that circulate around them, they could offer valuable help to overcome this crisis.

Certainly, the use of technology, if regulated, can be of help to scientists. Indeed, O'Reilly-Shah et al. [ 39 ] highlighted the shortcomings in the US healthcare IT infrastructures, underlining the importance of the interoperability of healthcare data, which should refrain from the proprietary control of vendors and be accessible to healthcare providers, especially in times of crisis.

More generally, it could be said that technology and data sharing are particularly important for disseminating knowledge worldwide. Momtazmanesh et al. [ 40 ] sustained that sharing and solidarity are at the base of an indispensable international collaboration to fight the current and future pandemics. The pandemic has increasingly shown the need for an international ethical–political coordination framework [ 23 ], aiming at reducing disparities. In this regard, under the category of policy , many contributions regarded LMICs. One of the recurrent themes was the stress on already overburdened and underfunded public healthcare systems in Africa, India, and Latin America [ 41 – 45 ]. In a more general comparison between the North and the South of the world, Schuklenk et al. [ 43 ] affirmed that there is a significant difference in the number of available intensive care unit beds per population and that the access to cures is often wealth-based, as many hospitals in the South are private. However, Krishna [ 42 ] stated that COVID-19 is just another drop in an already full vase, as the Indian healthcare system is already plagued by internal issues (e.g., no access to medicines, vested political interests etc.). All in all, the policies against COVID-19 are, once again, putting the poorest countries and people at risk [ 43 , 46 ]. In India, for example, the poor were confined in ghettos without a proper social security net and their conditions were exacerbated by the lockdown [ 46 ]. Other approaches used in LMICs to fight COVID-19 include the use of fear appeals to regulate people’s behaviours [ 47 ]. However, it can be argued whether this technique is ethical and acceptable or not. On the other hand, Kapata et al. [ 48 ] positively affirmed that Africa was readier than for the previous epidemic outbreaks.

Other diseases, such as vector-borne and non-communicable diseases, and community-acquired infections are often included among other stressors [ 41 , 42 ]. Krishna [ 42 ] also affirmed that notwithstanding this, COVID-19 obtained much more funding compared to other existing deadly diseases (e.g., diarrhoea).

Another element contributing to exacerbating the situation is the lack of ethics committees in the hospitals to regulate and ease the work of healthcare operators. In fact, the latter do not only have to face very difficult choices in an environment dominated by material scarcity and public distrust [ 41 ], but they also have to work in precarious conditions and their striking for this matter could be seen as patient abandonment [ 43 ]. With regard to this, Gopichandran and Subramaniam [ 44 ] recalled the reciprocity principle , according to which the state should protect the interests of the healthcare workers, who risk their lives to care for those who are infected.

Some authors [ 16 , 44 , 45 , 49 ] agreed on the need for equity and clarity in the way governments inform citizens, not to undermine their trust. Most importantly, it was unanimously stated that policies for COVID-19 should always be adapted to different contexts, above all the ones related to minorities, in the respect of traditional beliefs [ 50 ], and to avoid exacerbations of pre-existing gaps between the rich and the poor [ 46 ]. To this purpose, self-determination is key [ 51 ]: in fact, LMICs should independently shape their response, relying on international partners in a critical manner. For instance, LMICs should avoid the unconditional acceptance of measures adopted in high-income countries that would result inappropriate in resource limited settings [ 52 – 54 ].

Overall, the number and significance of the ethical problems that emerged, which makes us understand how ethics should be increasingly involved in guiding political and scientific legal reasoning, lead us to disagree with Stoeklé and Hervé [ 55 ], who, by separating political discussions, scientific knowledge and ethics writes: "now really isn't the time for ethical reflections" and "ethics is only really useful if you have the time, and right now, time is exactly what we do not have."

Conclusions

This paper presented a systematic overview of scientific papers investigating ethical issues during the first wave of this pandemic. The papers highlighted some recurrent themes, namely the allocation of scarce resources, infodemic, HCWs’ duty to treat versus personal protection, privacy, and the safeguard of minorities.

Reviewing such themes, a year after the outbreak of COVID-19, highlights several facts.

The infodemic has been as devastating as the virus. While it could have been acceptable in the first months of this pandemic, it is somehow surprising that after three waves of COVID-19, there is still confusion around trustworthy sources and reliable guidance. A year after, there is still misinformation spread through digital social networks, although the object of the discussion has changed, focusing now on vaccination safety and scarcity, rather than MDs and PPE. The same doubts raised by Larson [ 15 ], Limaye et al. [ 13 ] and Bastani and Bahrami [ 16 ] in March 2020 on the intentional repression of information perpetuated by governments for calming anxious publics during the first wave, have been recently repeated in regard to the surge of COVID-19 that affected India since March 2021.

After more than 12 months from the first wave, the ethical concerns on the stigma and discrimination against particular populations is still relevant in many ways. For instance, several authors hypothesize a causal link between COVID-19 and the surge of violent acts towards Asians living in the USA [ 56 , 57 ]. On the global scale, this discrimination will certainly not be mitigated by the delay in vaccinating populations in LMICs.

Moreover, the ethical concerns arising from balancing the need for track and trace with the risks for privacy, seem to be still unresolved. After a year and half into the pandemic, the same scepticism has crossed many COVID-19 waves resulting in several Apps being abandoned for more traditional phone-based methods. Similarly, the envisioned “real-time” monitoring based on randomized laboratory tests is still far from being possible and could still lead to incorrect political decisions heavily influencing the future of a country. One year on, in fact, although this risk has lowered, globally, it still is critical for some LMICs, where several challenges hinder COVID-19 testing [ 58 ].

Concerns on immunity certifications and pass, are yet far from being resolved, although the attention has now shifted towards the vaccines.

Concerning HCWs, the memory of recognising their efforts by cheering and clapping from the windows is far.

The scarcity of PPE and MDs seems to be overcome now, in many high-income countries, also thanks to the massive effort of United Nation agencies lead by the World Health Organization. Yet, the problem is far from being solved without structural interventions, as demonstrated by the surge in cases in India.

As regards the ethical issues on the appropriateness of economical evaluations and the transparency of political decisions, raised by authors during the first months of this pandemic, there is a need for more time before one can make unbiased reflections.

Inclusiveness seems to be one of the forgotten principles during this pandemic. While this issue was raised from the very start, the question remains open for several groups of populations, which have been not prioritised during the first wave, such as children, poor, unstable workers, chronic patients, and single parents.

Overall, this review identified a number of papers referring to ethics in their title, which in the end presented little or no contribution to the ongoing discussion on ethical issues arising from COVID-19. While the attention of many scholars to this important topic is remarkable, we conclude this review with the doubt that ethics is still considered as a tick-box exercise by many, when not a “humanitarian embellishment” of their technical work.

Conversely, ethics should be deeply interwoven with science, theoretically and methodologically. Besides, helping the evaluation of the arising issues, ethics could help scientists ponder on the risk–benefit balance of their publications, and also on the final purpose of their work, i.e., the progress of humanity. The unprecedented number of retracted papers suggests that during this pandemic the race to participate to the infodemic overcame the sense of responsibility, which should have imposed, in many cases, a responsible silence [ 59 ].

Below is the link to the electronic supplementary material.

Acknowledgements

DP, AM, LP would like to acknowledge the EPSRC and the Institute of Advanced Studies of the University of Warwick.

Abbreviations

DP and LP received support from the University of Warwick with two Warwick Impact Found grants supported by the EPSRC Impact Accelerator Award (EP/K503848/1 and EP/R511808/1). AM’s Fellowship is supported by the WIRL COFUND – Marie Sklodowska Curie Actions, Institute of Advanced Study, University of Warwick (UK). All the above-mentioned funds supported the systematic literature search and review.

Availability of data and materials

Declarations.

Ethics approval was not required for this study.

The author(s) declare no competing interests.

This article belongs to the Topical Collection: COVID-19 Health Technology: Design, Regulation, Management, Assessment

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• Published: 07 August 2024

Scientific mapping and production analysis of digital comic, animation, and digital cartoon in education

• Nadi Suprapto   ORCID: orcid.org/0000-0002-8990-7412 1 ,
• Khoirun Nisa’ 2 ,
• Imam Sya’roni 3 &
• Alif Syaiful Adam 3  

Humanities and Social Sciences Communications volume  11 , Article number:  1009 ( 2024 ) Cite this article

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• Cultural and media studies

Analyzing scientific mapping literature activity on digital comics, animation, and digital cartoons is essential for future research and development. The objective of the current study was to assess research activity in digital comics, animation, and digital cartoons. VOSviewer and Scopus were used to perform bibliometric analysis. The research was conducted from 2013 to 2023 and found 288 documents. In 2022, most research reports on digital comics, animation, and digital cartoons were published. China is the most productive region in terms of articles, with English being the most widely used language. The most common subject area is computer science, and the most common source is the journal Lecture Notes in Computer Science. The most productive author is Dong Hao Li. Zhejiang University is the most productive institution. Future research should concentrate on a single discipline and work with Google Scholar and Web of Science data for in-depth analysis.

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Introduction.

Educational technology in education applications like digital visual learning media has revolutionized conventional learning mechanisms (Shen and Ho, 2020 ). Digital visual learning media in education has become a trend in recent years. Comics, animations, and cartoons are visual learning media with similar characters. A comic is a single-panel illustration that depicts a story or journey (Alousque, 2020 ). Comics are increasingly prominent in entertainment, industry, culture, and the arts (Yamanishi et al. 2021 ). The students get simulant to discuss material or topics through the cartoons (Hansen and Skeiseid, 2022 ). Comics are a kind of animation that aims to amuse readers by introducing characters and telling a tale in a sequence closely tied to the image (Riwanto and Wulandari, 2018 ). Furthermore, animation is an illusion created by images and displayed on a computer screen (Cevahir et al. 2022 ).

Cartoons are frequently used in education to assist students in developing their knowledge and improving their problem-solving skills (Gokkurt-Ozdemir et al. 2021 ). Cartoons are practical tools for reducing misconceptions among students in science classes. Then, comics can help students improve their literacy, language skills, and awareness of social issues (Das and Singh, 2022 ). Cartoons and animation have several educational benefits, including attracting attention, motivating students, and presenting information and explanations visually, making teaching more appealing (Appiah et al. 2022 ; Cevahir et al. 2022 ).

Much research about digital multimedia has used the ADDIE model and focused on the scope of education. Digital cartoons, animation, and comics have been widely employed in education since the development of digital technology and the internet within the educational system. Much research explains the practical implementation of digital multimedia. Digital cartoons as visualization media can explain course topics well, so the students make courses enjoyable and increase their interest in course learning (Gokkurt-Ozdemir et al. 2021 ). Animation is frequently used in education, especially in Augmented Reality (AR). Science subject materials such as mathematics, chemistry, and physics-based animation with AR technology can increase students’ motivation and achievement levels. Digital comics are straightforward and feasible to increase students’ literature and motivation (Karlimah et al. 2021 ; Arafik et al. 2021 ). Digital technology is used in education as a media that significantly contributes to increased learning outcomes and 21 st -century skills such as critical thinking, analytical thinking, creative thinking, and problem-solving skills (Arafik et al. 2021 ; Yıldız et al. 2017 ).

Over the past ten years, digital comics, animation, and digital cartoons have progressively become a part of learning media in humanities and social sciences research. This study aims to analyze the trends and recommendations of visual media education. In detail, this research uses bibliometric analysis to track the development of digital comics, animation, and digital cartoons in education. Data is taken from the Scopus database to answer the following research questions:

Regarding research characteristics and features, what were the location, type of documents, sources, and authors of digital comics, animation, and digital cartoons in education research?

In terms of application, what were the dominant subject areas and what are the contributions and differences between digital comics, animation, and digital cartoons in education research?

Materials and Methods

Scientific mapping uses bibliometric analysis to assess and quantify publications in a specific research field. The analysis results can help future researchers to understand the patterns and trends of research and find out the novelty (Kulakli and Osmanaj, 2020 ; Suprapto et al. 2021 ; Yang et al. 2017 ; Yanuarti and Suprapto, 2021 ; Zakhiyah et al. 2021 ).

Data were collected from the Scopus database because it is one of the most significant sources of scientific kinds of literature, such as conference papers, book chapters, books, articles, and notes (Suprapto et al. 2021 ; Xie et al. 2020 ; Yanuarti and Suprapto, 2021 ; Zakhiyah et al. 2021 ).

Data Collection

The data were collected in October 2023. The authors input the keywords on the title and abstract: TITLE-ABS-KEY (digital AND comic OR animation OR digital AND cartoon) . The authors found 466 documents. Then, the data were collected from 2013–2023, and 288 documents were documented in .csv and .ris format.

Data Analysis

VOSviewer used .ris metadata to visualize the network and determine the association between authors, documents, and keywords (Guleria and Kaur, 2021 ; Olandinrin et al. 2023 ; Van Eck and Waltman, 2020 ). Then .csv metadata used Microsoft Excel to categorize and plot the data about nation, affiliation, language, year of publication, and other data from the.csv file. VOSviewer and Microsoft Excel are all software used to analyze the data in bibliometric research (Prahani et al. 2022 ; Setyaningsih et al. 2018 ). Microsoft Excel was used to analyze RQ 1, using Microsoft Excel results, and RQ 2 was solved using VosViewer.

Results and Discussion

Research question 1—research characteristics and features, year-publication, language, and type of documents distribution.

Figure 1 shows the year publication distribution of digital comic, animation, and digital cartoon research. Over the last decade, this research has fluctuated with no extreme decline. The average publication was 26 documents, and five years received publications above the average. The most recent publication year of digital comics, animation, and digital cartoon research was 2022, with 38 documents (see Fig. 1 ). The second-largest distribution, with 36 documents, occurs in 2020. There was a rapid spike in publications - doubling - in the first year of the pandemic, namely 2019 and 2020. The percentage of total documents (%TD) and total citations (%TC) is also illustrated in Fig. 1 . In 2020, the world experienced the COVID-19 pandemic, and there was a change in the learning system to online distance learning. Several institutions and grades use digital visual media and technology to support learning activities (Irfan et al. 2020 ).

Year-wise distribution of documents.

Animation is an adequate distance teaching method and increases student motivation and participation (Azlan et al. 2020 ; Inangil et al. 2022 ). Digital comics are a popular source of reading history and science subject material that can increase students’ reading skills and motivation (Damopolii et al. 2021 ). Digital cartoons become increasingly popular during the pandemic, and several researchers use cartoons for their ADHD children (Jena and Devi, 2020 ). In addition, 2018 and 2020 were the top cited years. Citation on publication documents from 2021 to 2023 has the lowest percentage and declines yearly. Therefore, this research requires an increase in quantitative publications. Through the trends discussed above, future research can focus on digital technology that can be combined with visual media to measure student skills.

English is the most common language, accounting for 270 documents or 93.75%. Chinese was used in digital-visual media research with five documents and a percentage of 1.74%. Each document in French, Russian, and Turkish gets three documents published. Dutch, Italian, and Spanish were used in a small percentage of the document (less than 1%) (see Fig. 2 ). Many sources and publishers used English as their standard international language. For example, Springer and Taylor & Francis Ltd published their English document. However, many sources-publisher used another language to publish their research document: Chinese-Editorial and Publishing Board of JIG, Italian-Universita degli Studi di Milano, Turkish-AVES, Portuguese-Research Centre in Education, Russian-Russian Psychological Society, Spanish- Fundacion para la Investigacion Social Avanzada , and Dutch-Nederlands tijdschrift voor geneeskunde .

Language used in documents.

There are 288 digital comic, animation, and digital cartoon research documents, including 159 articles, 82 conference papers, 18 book chapters, 12 books, six conference reviews and reviews, and five documents of other types (see Fig. 3 ). The research documents were published from several sources (see Fig. 3 ). All articles and ten conference papers were published in the journal, and 61 were published in conference papers, books, and book series. Two documents were published in the trade journal.

Type of research document and sources.

The source publishing and subject area of digital comics, animation, and digital cartoons

40% of the top sources in visual media education research are journals and conference papers (see Table 1 ). The remaining 20% is published through a book series with Springer Verlag as publisher. Top cited documents in journal sources have the highest number of citations: ACM Transaction on Graphics (21 citations) and Multimedia Tools and Applications (14 citations). Two journals have many scopes of research that represent the implementation of digital visual media education (see Fig. 4 ). In this journal, researchers discuss several topics like distance and interactive learning (Guo et al. 2020 ) and implementing multimedia in learning activities (Li and Lu, 2023 ). However, the top cited authors in this source are not included among the top authors list (see the following subsection).

Aims and sources of ACM Transaction on Graphics and Multimedia Tools-Applications.

Figure 5 represents several subject areas in digital visual media research related to computer science. Computer science is the subject area in top sources (89 documents) and top author (see following sub-section). Other research has concreated in social sciences (66 documents), engineering (40 documents), art & humanities (31 documents), and other subject areas: medicine, mathematics, decision sciences, psychology, BMA, physics-astronomy. The development of digital visual learning media has a significant impact on education. Research has impacted science, engineering, artificial intelligence, and other fields. Computer science is more closely related to mathematics, engineering, and science than many scientific fields. While social computing investigates the relationship between social behavior and computational systems, computational social science applies computer science theory to the social sciences.

Subject area of digital visual media research.

The productive author, affiliation, and countries of digital comics, animation, and digital cartoons research

The top ten authors with publications in digital comics, animation, and digital cartoons are listed in Table 2 . China and Hong Kong are all research-intensive countries with many publications. China has over 4600 animation industries and creates several scientific films, promoting scientific knowledge and ideological statements with animation effects and cartoons (Zhuang, 2023 ). Four Chinese researchers and three Hong Kong researchers from different affiliations participated in digital visual media education research. Li, D. from China has published more than other researchers (3 documents). Yu, Y from Hong Kong got the top citation and the highest h-index, and Wang W. from the US got the first rank for his publication documents. Several researchers got their gold publication years in the last decade. 2022 is the top publication year; two authors from China and the last one from the US participated (see the previous sub-section). In addition, 80% of affiliations’ top authors are included in the top ten affiliations. The University of Tokyo ranks second in top affiliations (see Table 3 ).

Furthermore, there are three cluster co-authorships in this scope of research: Xu’s cluster (blue), Wu’s cluster (red), and Zhang’s cluster (green) (see Fig. 6 ). The largest cluster (red and green) contributed are related to the smallest cluster (blue). China-Hong Kong authors dominated three clusters. Xu and Wu researched computer graphics and deep learning.

A network visualization of co-authorship.

There are four affiliations and three top authors are listed in Table 3 . In addition, China’s affiliation dominated this scope of research. On the other hand, Duke University and the University of Southern California have the top citations. Based on the discussion in this sub-section, the four biggest countries contributed to digital cartoons, animation, and digital comics: the US, China, Hong Kong, and Japan. The US and Japan are the top animation, cartoon, and comics industry makers. Many products from these countries were imported to China and Hong Kong.

Figure 7 shows the distribution research worldwide. The dominant countries are China (48 docs) and the US (47 docs), which have top authors. In addition, The University of Tokyo and Zhejiang University contributed 23% to this scope of research. 8.64% of each document is from Hong Kong, the US, the Netherlands, and the UK. Based on Fig. 7 , it is known that research on comics, animation, and cartoons still needs to be improved. For example, in the Asian region, East Asia has significantly contributed to research - South Korea, Japan, Hong Kong, China, and Taiwan. In the Southeast Asia region, only three countries participated, namely Malaysia, Indonesia, and Thailand, with each publication having six documents. In addition, the only South Asian region is India, with 15 published documents.

The distribution of research in worldwide.

Research Question 2- The visualization of co-occurrence-keywords of digital comics, animation, and digital cartoons

The first top-cited document from the United Kingdom (the Queen Mary University of London and the University of Edinburgh) is about sketch images, DG methods, and deep learning. Five top-cited documents discuss various points of view and studies regarding visual media (see Table 4 ). Two papers discuss how to make digital visual media, such as DG methods and auto-painter. According to Li et al. ( 2017 ), implementing DG (Domain generalization) methods with photos, sketches, cartoons, and paintings presents a significant challenge for future research. Besides, Bleiker ( 2018 ) uses the cGAN model and Wasserstein distance to overcome model collapse and outperforms other image-to-image methods on various sketch datasets. Other research discusses another function of visual media, especially in politics, medicine, and disaster. Visual global politics has the function of visualizing and exploring several international events and politics as a resource to enhance students, scholars, and practitioners’ understanding (Liu et al. 2018 ). Bossu et al. ( 2018 ) conducted EMSC websites or the LastQuake app to reduce anxiety by providing timely information and services to eyewitnesses, potentially contributing to immediate global seismic risk reduction. The study conducted by Volante et al. ( 2016 ) suggests that virtual human appearance can affect critical emotional reactions and users’ perceptions of the virtual interlocutors. In other words, there are several clusters in visual media learning research.

In Fig. 8 , six related clusters are visualized, while Fig. 9 presents the distribution of keywords used in research over the last ten years. In short, the latest research on visual media still needs to discuss more research regarding the implementation of digital technology to help create visual media and its benefits for students (changes in skills and measurement of knowledge) as users of visual learning media.

How to Create Visual Media (Red)

Currently, the animation is created using a computer. The animation looks more modern and has more volume (three-dimensional), high accuracy, and natural character element visualization thanks to interactive computer graphics (Wiana et al. 2018 ). As multimedia, text, audio, graphs, visual effects, sound effects, image texture, and interaction are all included in the animation, by the time the animation is produced, the shareability of co-participants experiences has already been established (Cantarutti, 2022 ). Interactive multimedia has the potential to accommodate users with a variety of learning styles and internet-based education.

Figure 10 illustrates one method of creating motion graphics in visual media and e-learning (Wiana et al. 2018 ). 3D modeling software (Pillen and Matthews, 2022 ), MappleSim Software (Tsegay et al. 2022 ), Blender (De Vries et al. 2022 ), 3D printers, Sketchfab (Aristov et al. 2022 ), and other applications and software are frequently used to create digital cartoons, digital comics, and animation. In the previous discussion, we explained several examples of methods used by world researchers in creating their visual media. Factor and method animation, such as textures, decomposition, compression, and color, were part of the red cluster (Ding and Xie, 2020 ). The digital cartoons, animation, and digital comics are all types of images that require an algorithm and application or software to create (Wiana et al. 2018 ; Pillen and Matthews, 2022 ; Tsegay et al. 2022 ; De Vries et al. 2022 ; Aristov et al. 2022 ).

Characteristics of Research Sample (Green)

This cluster is focused on research sample characteristics such as adult, female, child, and male keywords. Visual media learning was used in behavior research and social science-humanities (see Fig. 11 ). For example, Volante et al. ( 2016 ) examines the interrelationship between visual media and social-emotional variables. The findings show that while harmful affect levels were much lower in the visually realistic condition, male participants showed higher arousal levels in all circumstances. Participants had varying responses regarding social-emotional variables such as shyness, presence, perceived personality, and enjoyment-joy. In addition, research focused on children, females, adults, and other characteristics around 2020. This cluster is also related to technology implementation and education in the next cluster.

Technologies to support research (Dark Blue)

In 2020, research focused on factors that go into creating digital multimedia, such as animation, cartoons, digital devices, AI and VR (see Fig. 12 ). Both can combine real-time and interactive visualization concepts (Chen et al. 2019 ; Prahani et al. 2022 ). Virtual reality can be applied to visualization and e-learning (Pangaribuan and Zulkarnain, 2021 ). Animation, comics, and cartoons are linked to deep learning, human-computer interaction, and education (see Figs. 13 and 14 ). As a type of multimedia digital learning, they have enabled students to use digital learning to learn anywhere and at any time (Cantarutti, 2022 ).

Type of research (Blue) and learning systems (Green)

Students’ participation, activity, and understanding can increase using digital visual media such as digital comics, animation, or digital cartoons (Suprapto et al. 2021 ; Yanuarti and Suprapto, 2021 ). That is related to the current condition in which devices and human activity users are integrated into technology (Prahani et al. 2022 ). There is currently game-based learning or gamification (Sukstrienwong, 2018 ). Digital visual media is also related to behavioral integrated surveys (see Fig. 15 ). Behavioral surveys are self-reported, subjective accounts of individual actions affecting well-being (Moss et al. 2023 ). They are crucial for identifying community issues, improving public awareness, and identifying potential solutions.

Another function animation (Purple)

Visualization of keywords by clusters.

Visualization of keywords by year publication.

Cartoon and the making process.

Digital comics, animation, and digital cartoons are most used in education research. It has recently been used as visual-digital media that increased multiple intelligence and literacy (Utomo and Ahsanah, 2020 ; Febriani et al. 2021 ; Kumar et al. 2019 ; Martzoukou, 2020 ). When learning combined with visual media, learners enjoy and are interested in watching digital media (digital cartoons, animation, or digital comics) so learners directly provide factual knowledge (Kühl, 2021 ). Implementing of digital media, such as digital comics, animation, and digital cartoons, is becoming more widespread (Ding and Xie, 2020 ). Digital comics are made in several stages to produce high-quality and compact comics. Bold colors can express more information and enhance the human visual experience (Chen et al. 2019 ; Chen et al. 2022 ). Liu et al. ( 2018 ) use visual media to improve the knowledge and awareness of students, academics, and practitioners of international events and politics.

Table 5 informs the similarities and differences between digital comics, animation, and digital cartoons. Overall, there are similarities in several studies on digital comics, animation, and digital cartoons, such as using the same learning model. Several international researchers use (Problem-Based Learning) PBL and inquiry learning with digital visual media. They use a visual concept of digital media based on contextual problems with different dependent variables (indicators of students’ skills and knowledge). Many studies also report RnD research using pre-posttest design, interviews, and questionnaire models to analyze student responses using comics, animation, and digital cartoons. Jamal et al. ( 2019 ) reported using cartoon concepts in problem-based learning. Many international authors provide a scenario for students to discuss everyday life problems, but the cartoonization of these scenarios is not explicitly provided. The content activity in modules is similar but with different scenarios.

Visualization of human keywords.

Technology most used in research in VR and AI.

Conclusions

This study can complement future research by providing new information for librarians, researchers, educators, digital developers, and policymakers to advance digital comics, animation, and digital cartoons and create a Scopus document. The most recent research on digital comics, animation, and cartoons was published in 2022, primarily in China, and authored by Dong Hao Li. Zhejiang University is the most productive affiliation. The primary source for this research is the Journal Lecture Notes in Computer Science. Digital comics, animation, and digital cartoons are different in their functions, devices, packaging, types, content, and access.

Animation and its visualize keywords.

Visualization of keywords on digital comic and cartoon.

Further research can be developed based on the scope of computer science and social sciences, especially research on student behavior. Further research can also develop and integrate this product into various technologies such as AI, AR, and others. From 2013 to the present, studies about digital comics, animation, and digital cartoons have been conducted in education. Future researchers can collaborate with Google Scholar or the Web of Science data for in-depth analysis.

Research methods most used in research: questionaire and surveys.

Data availability

The datasets generated during and/or analysed during the current study are available in this link: https://doi.org/10.6084/m9.figshare.26335660 . This data set was proposed in xls. and csv. and process in VOSviewer and Microsoft Excel.

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Nadi Suprapto

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Conceptualization: [Nadi Suprapto]; literature search and data analysis: [Khoirun Nisa’, Alif S. Adam]; Writing - original draft preparation: [Nadi Suprapto, Imam Sya’roni]; Writing - review and editing: [Nadi Suprapto, Khoirun Nisa’]; Funding acquisition: [Nadi Suprapto]; Resources: [Alif S. Adam, Imam Sya’roni]; critically revised the work: [Khoirun Nisa’].

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Suprapto, N., Nisa’, K., Sya’roni, I. et al. Scientific mapping and production analysis of digital comic, animation, and digital cartoon in education. Humanit Soc Sci Commun 11 , 1009 (2024). https://doi.org/10.1057/s41599-024-03513-4

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Received : 26 June 2023

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DOI : https://doi.org/10.1057/s41599-024-03513-4

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