ethics statement in research paper

Ethical statements

If your work involves live subjects (human or animal) you must provide an appropriate ethical statement when submitting your paper. The most suitable location for this is normally the methods section of the manuscript. However, to preserve anonymity in double-anonymous journals please do not add the ethical statement to the manuscript, instead complete the relevant section on the submission system.

Our editorial team checks all ethical statements are appropriate for the study being reported. Any manuscript submitted without a suitable ethical statement will be returned to the authors and will not be considered further until an appropriate and explicit statement is included.

Authors should include the following points in the ethical statement (if applicable) when submitting a paper:

• The institutional or national research ethics committee /review board that approved the research must be named. Include the approval number/ID if one was given. If the research received a waiver of approval from the ethics committee/review board or did not require approval for some other reason please state this and explain why.
• For investigations involving animal experimentation you should state which institutional and/or national animal care and use guidelines were followed.
• You should state that the research was conducted in accordance with the principles embodied in the  Declaration of Helsinki  and in accordance with local statutory requirements.
• You should state that all participants (or their parent or legal guardian in the case of children under 16) gave written informed consent to participate in the study
• For research which involves identifiable human subjects (including donors of cells or tissues) you must include a statement confirming that consent was given for publication by all participants (or their parent or legal guardian in the case of children under 16). In order to protect participant anonymity, authors do not need to send proof of this consent to us at IOP Publishing. Where a donor has deceased prior to the research and is therefore unable to grant consent but is still identifiable (e.g. HeLa cells), their origin and lack of consent should be acknowledged.
• Articles relying on clinical trials should quote the trial registration number at the end of the abstract. IOP also encourages the registration of such studies in a public trials registry prior to participants being enrolled.

Ethics Gen Tool

Our free  Ethics Generator Tool helps authors to provide correctly worded ethics statements to match the statement criteria of an author’s journal of choice. EthicsGen enhances the publishing experience for our authors, reviewers and readers, increase efficiency and speed, and supports our commitment to deliver the highest integrity standards.

When a statement is complete, the user can copy the text to the clipboard or download it as a file, then paste into the appropriate section on the submission form.

Double-anonymous submissions

• In double-anonymous journals please do not add the ethical statement to the manuscript , instead please complete the relevant section on the submission system. This information is not shared with reviewers and therefore does not need to be anonymised.
• If a reviewer feels they need to see an ethical statement, they are advised to contact the journal to discuss.

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Read more about BMJ Policies on:

Ethical approval of research involving human participants

Ethical approval of research involving animals.

Our policy is to ensure that all articles published by BMJ report on work that is morally acceptable, and expects authors to follow the World Medical Association’s  Declaration of Helsinki . To achieve this, we aim to appraise the ethical aspects of any submitted work that involves human participants, whatever descriptive label is given to that work including research, audit, and sometimes debate.

Our policy on these issues has been developed with the help and advice of the  BMJ Ethics Committee  and its key elements are explained here.

Statement of Ethics Approval

We require every research article submitted to include a statement that the study obtained ethics approval (or a statement that it was not required and why), including the name of the ethics committee(s) or institutional review board(s), the number/ID of the approval(s), and a statement that participants gave informed consent before taking part.

In addition we welcome detailed explanations of how investigators and authors have considered and justified the ethical and moral basis of their work. If such detail does not easily fit into the manuscript please provide it in the covering letter or upload it as a supplemental file when submitting the article. We will also be pleased to see copies of explanatory information given to participants. Even if we do not include such detailed information in a final published version, we may make it available to peer reviewers and editorial committees. We already ask peer reviewers to consider and comment on the ethics of submitted work.

Appraisal of Ethical Issues

Editorial appraisal of ethical issues goes beyond simply deciding whether participants in a study gave informed consent although this is, of course, one very important issue to consider. Editors should judge whether the overall design and conduct of each piece of work is morally justifiable, as summed up by the following questions:

• How much does this deviate from current normal (accepted, local) clinical practice?
• What is the (additional) burden imposed on the patients (or others)?
• What (additional) risks are posed to the patients (or others)?
• What benefit might accrue to the patients (or others)?
• What are the potential benefits to society (future patients)?

Even when a study has been approved by a research ethics committee or institutional review board, editors may be worried about the ethics of the work. Editors may then ask authors for more detailed information such as:

• how they justified the ethical and moral basis of the work
• to provide the contact details of the research ethics committee that reviewed the work, so that the journal can request further information and justification from that committee
• to explain what ethical issues they considered and how they justified their work, for studies that have not been reviewed by research ethics committees or institutional review boards

Editors may ask other editorial colleagues to evaluate the ethical aspects of an article, the authors’ comments, and the response of the relevant research ethics committee to the journal’s queries about ethics approval. This consultation may be informal, between the journal’s editors, or more formal, through seeking the advice of the BMJ Ethics Committee or the Committee on Publication Ethics (COPE). Problems referred to COPE or the BMJ Ethics Committee will be considered as anonymised summaries of the relevant articles, written by the editors concerned.

What happens when the journal considers a study to be unethical?

We believe that editors have a duty to take on issues of unethical audit or research, not to seek punishment for the authors, but to prevent unethical practice and to protect patients.

If the Editor, with or without the advice of its ethics committee and/or COPE, considers the work in a submitted article to be ethically unsound the editor may seek further advice or recommend investigation or action. The fact that the article would have been rejected anyway for other scientific or editorial reasons would not prevent the editor from taking such further action on serious ethics problems.

In the first instance the editor would usually contact the head of the department where the work was done to explain their concerns and recommend a local investigation. Secondly, the editor might write to the professional registration body of the paper’s guarantor or principal investigator. For a doctor in the UK, this body would be the General Medical Council.

Exceptional circumstances

In rare instances the journal might publish an article despite ethics problems in the work it reported. The usual reason would be that work done in one setting might not reach the ethical standard of work done in another setting, because of differing local resources and standards for health care and research. In deciding to publish such an article, we would consider carefully the context of the study and aim to balance the overall benefit to society against the possible harm to the research participants.

All material published in BMJ journals which reports experiments performed using animals must adhere to high ethical standards concerning animal welfare.

Manuscripts will be considered for publication only if the work described:

• follows international, national and institutional guidelines for the humane treatment of animals and complies with relevant legislation;
• has been approved by the ethics review committee at the institution or practice at which the studies were conducted (where such a committee exists);
• for studies involving non-human primates, demonstrates that the standards meet those of the NC3Rs primates guidelines ;
• for studies using client-owned animals, demonstrates a high standard (best practice) of veterinary care and involves informed client consent.

Before a manuscript can be accepted, authors must:

• confirm that legal and ethical requirements have been met with regards to the humane treatment of animals described in the study;
• specify in the Materials or Methods section the ethical review committee approval process and the international, national, and/or institutional guidelines followed.

Editors retain the right to reject manuscripts on the basis of ethical or animal welfare concerns. Papers may be rejected on ethical grounds if the study involves unnecessary pain, distress, suffering or lasting harm to animals, or if the severity of the experimental procedure does not appear to be justified by the value of the work presented. We ask that the work would be likely to gain approval in Europe under the European Directive 2010/63/EU (on the protection of animals used for scientific purposes).

See ‘What happens when the journal considers a study to be unethical?’ above for an outline of how ethical concerns will be dealt with

Manuscripts describing animal research must include a justification for the use of animals, and for the particular species used. They should also provide details of animal welfare, including information about housing, feeding and environmental enrichment, a description of steps taken to minimise suffering, humane endpoints and method of euthanasia. If the study has any implication for the 3Rs (replacement, reduction and refinement), these should be discussed in enough detail so that readers can implement the 3Rs in similar experiments.

欲查看简体中文版的出版伦理与学术不端相关政策，请点击此处

This section was adapted from an article by Dr Trish Groves, BMJ’s Director of Academic Outreach. Oral Diseases (2010) 16, 313-315.

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Ethics in Research and Publication

Pradyumna pan.

Ashish Hospital and Research Centre, Pediatric Surgery Unit, Jabalpur, Madhya Pradesh, India

Published articles in scientific journals are a key method for knowledge-sharing. Researchers can face the pressures to publish and this can sometimes lead to a breach of ethical values, whether consciously or unconsciously. The prevention of such practices is achieved by the application of strict ethical guidelines applicable to experiments involving human subjects or biological tissues. Editors too are faced with ethical problems, including how best to handle peer-review bias, and find reviewers with experience, probity, and professionalism. This article emphasizes that authors and their sponsoring organizations need to be informed of the importance of upholding the guidelines in research and ethical rules when disclosing scientific work.

I NTRODUCTION

Accurate reporting of results of research depends on the integrity of the authors, their application of and compliance with guidelines relating to the assurance of an ethical approach throughout and also on robust institutional research governance protocols ensuring that study design, conduct, and analysis of research and the publishing process all comply to an ethical framework. There is a growing concern that research misconduct over the past two decades has become more common.[ 1 ] It is challenging to determine whether this apparent increase is a true increase in the number of misconducts committed or detection has increased during this period.[ 2 ]

W HAT IS P UBLICATION E THICS ?

It is important that persons involved in the research must be compliant with the ethical framework in which they should function. The Committee on Publication Ethics (COPE) published guidelines on Good Publication Practice in 1999[ 3 ] and continues to update these regularly.[ 4 ]

Study design

The design of the study is a collection of methods and procedures used to gather and analyze the data on variables defined in a research. A poorly designed study can never be recovered, whereas an inadequately analyzed study can be re-analyzed to reach a meaningful conclusion.[ 5 ] The study design should be clearly expressed in a written protocol. In clinical studies, the number of participants to be included in the analysis should be sufficiently large to give a definitive result. Local ethical research committees should hold back approval until the deficiencies in the design of the study have been corrected. All investigators should agree on the final protocol, and their contributions should be clearly defined.

Ethical approval

For all studies involving individuals or medical records, approval from a duly appointed research ethics committee is necessary. The research protocol should adhere strictly to the international standards such as those of the Council for International Medical Science Organizations.[ 6 ]

When human tissues or body fluids have been collected for one project for which ethical authorization and consent has been obtained, these preserved specimens cannot be used again without further permission. It should be presumed that no author can publish research of humans or animals that do not follow the ethical standards of the country where the article is published.[ 2 ]

Data analysis

The data analysis methodology should be clearly stated in the protocol. The variations such as post hoc analysis or data omission should be agreed upon and reported in the paper by all investigators.[ 7 ] The capacity for manipulating data electronically now is enormous. Original images should always be retained and any alteration should be revealed.

The International Committee of Medical Editors (the Vancouver Group) has developed authorship guidelines that allow each writer to make a substantial contribution throughout the process.[ 8 ] In the past honorary authorship had been employed widely. However, the concept that the professor or department head should inevitably find his/her way to a paper is no longer acceptable. Each contributor should be able to mention clearly how they took part in the study. Each author must take public responsibility for the work published in the journal, and it is desirable to have one senior author, to serve as a guarantor. Participation in fundraising, data collection, or general supervision of the research is insufficient for authorship. Authorship acknowledgment should be based on substantial contributions to: (1) concept and design, (2) interpretation of data, (3) drafts and critical revisions of intellectual content, and (4) final approval of the version to be published.[ 2 ]

There is a possible conflict of interest when an investigator, writer, publisher, or reviewer has a financial, personal interest, or opinion that may impair their objectivity, or improperly influence their behavior. Financial ties are the most visible competing interests. As a result of personal relationships, academic rivalry, and intellectual zeal, competing interests can also exist. Competing interests are not unethical as long as they are revealed. They should be disclosed to the ethics committee and to the editor of the journal to which a article is submitted.

P EER R EVIEW

Peer review is the method used to evaluate the quality of articles submitted to a journal. COPE has developed ethical guidelines for peer reviewers.[ 9 ] The affiliation between the author, the editor, and the peer reviewer is a confidential collaboration. It is only with the editor's permission the manuscript should be passed on to a colleague or other individuals. A reviewer or editor should not use the information contained in the paper for their benefit.[ 2 ] Journals should have clearly defined and communicated policies on the type of peer review used, for example, single-blinded, double-blinded, open, or postpublication.[ 10 ] Peer reviewers can play a vital function in figuring out data fabrication, falsification, plagiarism, image manipulation, unethical research, biased reporting, authorship abuse, redundant or duplicate publication, and undeclared conflicts of interest.[ 11 ]

D UTIES OF E DITORS

Editors are the wardens of the scientific literature and are responsible for maintaining high research and publishing ethics standards. There may be competing interests among participants, and it is the responsibility of the editor to ensure that they do not affect the journal. They should not be hesitant to publish work that challenges previously published studies in their journal, and they should not reject studies with negative results.[ 2 ] Editors must act promptly if a published paper is found to have publication misconduct.[ 12 ]

R ESEARCH AND P UBLICATION M ISCONDUCT

Research misconduct represents a spectrum ranging from the errors of judgment (mistakes made in good faith) to deliberate fraud, usually categorized as fabrication, falsification, and plagiarism.[ 13 ]

Falsification is the changing or omission of research results (data) or manipulation of images or representations in a manner that distorts the data to support claims or hypotheses.[ 13 ]

Fabrication is the construction or addition of data, observations, or characterizations that never occurred in the gathering of data or running of experiments.[ 13 ]

Plagiarism is the use of another individual or group's published work or unpublished ideas, language, thoughts, ideas, or expressions and makes the representation of them as one's original work.[ 14 ] The advent of digital material and its ease of accessibility have accelerated the use of plagiarism.[ 15 ] In some instances, plagiarism is used as a tool to cover up language problems for those whom English is not their first language. Where language is a problem, the authors should always be encouraged to obtain help in preparing their manuscript and not resort to using other people's words. It is unacceptable to republish a paper with minor changes, without referring to the primary publication, and to present it to the readership as a new source.[ 16 ]

R EDUNDANT P UBLICATION

Redundant publication (sometimes referred to as duplicate or triplicate publication) is the term used when two or more papers that overlap in a significant way are published in different journals without cross-reference.[ 17 ] It is not uncommon for two or more papers involving the same or similar patient database to be published in sequence. The authors should disclose this to the editor and make a cross-reference to previous papers. It is permissible to publish a paper in another language as long as this is disclosed.

Motives for misconduct

The motives why investigators fabricate records are not understood. Improving understanding of why researchers commit misconduct and detrimental research practices (DRPs) is essential. A range of possible reasons are: (1) career and funding pressures, (2) institutional failures of oversight, (3) commercial conflicts of interest, (4) inadequate training, (5) erosion of standards of mentoring, and (6) part of a larger pattern of social deviance.[ 18 ]

Prevention of misconduct

The widespread nature of research and publication misconduct indicates that existing control measures are inadequate. Enhanced methods for detecting misconduct are required. Even if research policing were made more effective, the fundamental question of why certain individuals violate their duties as a scientist or medical researcher intentionally or unintentionally would not be addressed. Clear guidance on ethics should be emphasized during research training in all institutions actively involved in research.[ 19 ] Training is a crucial step in avoiding publication misconduct. All researchers should be presented with organizational guidance and publishing ethics when they join a new organization. Misconduct in the study may be more common when investigators are alone with an inadequate review of data by a project supervisor. Research integrity depends on excellent communication between contributors, with frequent discussion of project progress and openness to any difficulties in adhering to the research protocol. Everyone should agree with the changes to the protocol. Maintaining documents must be of the highest quality. The law requires data and photographic record of experimental results to be maintained for 15 years. The records of laboratory experiments should be held in the department where the study is carried out and should be available for review for at least 15 years.

Strategies to support research integrity

• Ensure policies governing academic research not only are in place but are followed
• Enforce expectations for process rigor
• Communicate expectations for accurate accounting of time spent on research activities
• Evaluate the grant accounting function
• Establish an office of research integrity.[ 20 ]

C ONCLUSION

Accurate and ethical reporting is crucial to the quality of scientific research that is published. Unethical practices such as falsification of data and plagiarism cause long-term damage to the dependability of published literature. Whilst such practices do still exist, these can be prevented by having robust institutional ethical processes in place, regular training, and editorial vigilance.

Financial support and sponsorship

Conflicts of interest.

There are no conflicts of interest.

R EFERENCES

Ethics statement examples - ESRC

Introduction.

Proposals submitted to the ESRC must provide a full ethics statement that confirms that proper consideration has been given to any ethics issues raised. All ESRC-funded grants must be approved by at least a light-touch ethics review.

The ESRC does not require a favourable ethics opinion to be secured prior to submission of a research proposal. However, a proposal must state what the applicant considers to be the possible ethics implications throughout the research project lifecycle, what measures will be taken for ongoing consideration of ethics issues, what review will be required for their proposed research and how and when it will be obtained.

Risk and benefit to researchers, participants and others (for example,  potentially stigmatised or marginalised groups) as a result of the research and the potential impact, knowledge exchange, dissemination activity and future re-use of the data should also be considered as part of the ethical statement.

If an ethics review is required at a later stage in the project, this should be discussed and funding arrangements agreed in advance with the ESRC. At a minimum we expect that ethics review will be undertaken prior to the stage in the project that the actual research is carried out.

During peer review, reviewers and assessors will be asked to consider the ethical statement in the proposal. If they disagree with the proposed approach to ethics issues, or the statement does not adequately address these issues, this could lead to the rejection of a proposal, or the award of a conditional grant to ensure the necessary ethical considerations and ethical review are undertaken.

Last updated: 28 January 2022

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Authorship: inclusion & ethics in global research, consortia authorship, author contribution statements, author identification, author name change.

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Authorship provides credit for a researcher's contributions to a study and carries accountability. Authors are expected to fulfil the criteria below (adapted from McNutt et al ., Proceedings of the National Academy of Sciences, Feb 2018, 201715374; DOI: 10.1073/pnas.1715374115; licensed under CC BY 4.0 ):

Each author is expected to have made substantial contributions to the conception or design of the work; or the acquisition, analysis, or interpretation of data; or the creation of new software used in the work; or have drafted the work or substantively revised it

AND to have approved the submitted version (and any substantially modified version that involves the author's contribution to the study);

AND to have agreed both to be personally accountable for the author's own contributions and to ensure that questions related to the accuracy or integrity of any part of the work, even ones in which the author was not personally involved, are appropriately investigated, resolved, and the resolution documented in the literature.

Nature Portfolio journals encourage collaboration with colleagues in the locations where the research is conducted, and expect their inclusion as co-authors when they fulfil all authorship criteria described above. Contributors who do not meet all criteria for authorship should be listed in the Acknowledgements section.

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It is expected that the corresponding author (and on multi-group collaborations, at least one member of each collaborating group, usually the most senior member of each submitting group or team, who accepts responsibility for the contributions to the manuscript from that team) will be responsible for the following with respect to data, code and materials: (adapted from McNutt et al., Proceedings of the National Academy of Sciences, Feb 2018, 201715374; DOI: 10.1073/pnas.1715374115; licensed under CC BY 4.0 ):

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Nature Portfolio journals encourage collaboration with colleagues in the locations where the research is conducted, and expect their inclusion as co-authors when they fulfill all authorship criteria described above.  Contributors who do not meet all criteria for authorship should be listed in the Acknowledgements section.  We urge researchers to carefully consider researcher contributions and authorship criteria when involved in multi-region collaborations involving local researchers so as to promote greater equity in research collaborations.   

We encourage researchers to follow the recommendations set out in the Global Code of Conduct for Research in Resource-Poor Settings when designing, executing and reporting their research and to provide a disclosure statement in their manuscript that covers the aspects listed below (drawn from the Global Code of Conduct)  Editors may at their discretion ask authors to provide a disclosure statement taking these questions into account; the disclosure can be requested during peer review, shared with reviewers and published in the final paper as an “Ethics & Inclusion statement” in the Methods section. Our general policies on Research ethics and Reporting standards can be found here and here .  

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Home » Ethical Considerations – Types, Examples and Writing Guide

Ethical Considerations – Types, Examples and Writing Guide

Table of Contents

Ethical Considerations

Ethical considerations in research refer to the principles and guidelines that researchers must follow to ensure that their studies are conducted in an ethical and responsible manner. These considerations are designed to protect the rights, safety, and well-being of research participants, as well as the integrity and credibility of the research itself

Some of the key ethical considerations in research include:

• Informed consent: Researchers must obtain informed consent from study participants, which means they must inform participants about the study’s purpose, procedures, risks, benefits, and their right to withdraw at any time.
• Privacy and confidentiality : Researchers must ensure that participants’ privacy and confidentiality are protected. This means that personal information should be kept confidential and not shared without the participant’s consent.
• Harm reduction : Researchers must ensure that the study does not harm the participants physically or psychologically. They must take steps to minimize the risks associated with the study.
• Fairness and equity : Researchers must ensure that the study does not discriminate against any particular group or individual. They should treat all participants equally and fairly.
• Use of deception: Researchers must use deception only if it is necessary to achieve the study’s objectives. They must inform participants of the deception as soon as possible.
• Use of vulnerable populations : Researchers must be especially cautious when working with vulnerable populations, such as children, pregnant women, prisoners, and individuals with cognitive or intellectual disabilities.
• Conflict of interest : Researchers must disclose any potential conflicts of interest that may affect the study’s integrity. This includes financial or personal relationships that could influence the study’s results.
• Data manipulation: Researchers must not manipulate data to support a particular hypothesis or agenda. They should report the results of the study objectively, even if the findings are not consistent with their expectations.
• Intellectual property: Researchers must respect intellectual property rights and give credit to previous studies and research.
• Cultural sensitivity : Researchers must be sensitive to the cultural norms and beliefs of the participants. They should avoid imposing their values and beliefs on the participants and should be respectful of their cultural practices.

Types of Ethical Considerations

Types of Ethical Considerations are as follows:

Research Ethics:

This includes ethical principles and guidelines that govern research involving human or animal subjects, ensuring that the research is conducted in an ethical and responsible manner.

Business Ethics :

This refers to ethical principles and standards that guide business practices and decision-making, such as transparency, honesty, fairness, and social responsibility.

Medical Ethics :

This refers to ethical principles and standards that govern the practice of medicine, including the duty to protect patient autonomy, informed consent, confidentiality, and non-maleficence.

Environmental Ethics :

This involves ethical principles and values that guide our interactions with the natural world, including the obligation to protect the environment, minimize harm, and promote sustainability.

Legal Ethics

This involves ethical principles and standards that guide the conduct of legal professionals, including issues such as confidentiality, conflicts of interest, and professional competence.

Social Ethics

This involves ethical principles and values that guide our interactions with other individuals and society as a whole, including issues such as justice, fairness, and human rights.

Information Ethics

This involves ethical principles and values that govern the use and dissemination of information, including issues such as privacy, accuracy, and intellectual property.

Cultural Ethics

This involves ethical principles and values that govern the relationship between different cultures and communities, including issues such as respect for diversity, cultural sensitivity, and inclusivity.

Technological Ethics

This refers to ethical principles and guidelines that govern the development, use, and impact of technology, including issues such as privacy, security, and social responsibility.

Journalism Ethics

This involves ethical principles and standards that guide the practice of journalism, including issues such as accuracy, fairness, and the public interest.

Educational Ethics

This refers to ethical principles and standards that guide the practice of education, including issues such as academic integrity, fairness, and respect for diversity.

Political Ethics

This involves ethical principles and values that guide political decision-making and behavior, including issues such as accountability, transparency, and the protection of civil liberties.

Professional Ethics

This refers to ethical principles and standards that guide the conduct of professionals in various fields, including issues such as honesty, integrity, and competence.

Personal Ethics

This involves ethical principles and values that guide individual behavior and decision-making, including issues such as personal responsibility, honesty, and respect for others.

Global Ethics

This involves ethical principles and values that guide our interactions with other nations and the global community, including issues such as human rights, environmental protection, and social justice.

Applications of Ethical Considerations

Ethical considerations are important in many areas of society, including medicine, business, law, and technology. Here are some specific applications of ethical considerations:

• Medical research : Ethical considerations are crucial in medical research, particularly when human subjects are involved. Researchers must ensure that their studies are conducted in a way that does not harm participants and that participants give informed consent before participating.
• Business practices: Ethical considerations are also important in business, where companies must make decisions that are socially responsible and avoid activities that are harmful to society. For example, companies must ensure that their products are safe for consumers and that they do not engage in exploitative labor practices.
• Environmental protection: Ethical considerations play a crucial role in environmental protection, as companies and governments must weigh the benefits of economic development against the potential harm to the environment. Decisions about land use, resource allocation, and pollution must be made in an ethical manner that takes into account the long-term consequences for the planet and future generations.
• Technology development : As technology continues to advance rapidly, ethical considerations become increasingly important in areas such as artificial intelligence, robotics, and genetic engineering. Developers must ensure that their creations do not harm humans or the environment and that they are developed in a way that is fair and equitable.
• Legal system : The legal system relies on ethical considerations to ensure that justice is served and that individuals are treated fairly. Lawyers and judges must abide by ethical standards to maintain the integrity of the legal system and to protect the rights of all individuals involved.

Examples of Ethical Considerations

Here are a few examples of ethical considerations in different contexts:

• In healthcare : A doctor must ensure that they provide the best possible care to their patients and avoid causing them harm. They must respect the autonomy of their patients, and obtain informed consent before administering any treatment or procedure. They must also ensure that they maintain patient confidentiality and avoid any conflicts of interest.
• In the workplace: An employer must ensure that they treat their employees fairly and with respect, provide them with a safe working environment, and pay them a fair wage. They must also avoid any discrimination based on race, gender, religion, or any other characteristic protected by law.
• In the media : Journalists must ensure that they report the news accurately and without bias. They must respect the privacy of individuals and avoid causing harm or distress. They must also be transparent about their sources and avoid any conflicts of interest.
• In research: Researchers must ensure that they conduct their studies ethically and with integrity. They must obtain informed consent from participants, protect their privacy, and avoid any harm or discomfort. They must also ensure that their findings are reported accurately and without bias.
• In personal relationships : People must ensure that they treat others with respect and kindness, and avoid causing harm or distress. They must respect the autonomy of others and avoid any actions that would be considered unethical, such as lying or cheating. They must also respect the confidentiality of others and maintain their privacy.

How to Write Ethical Considerations

When writing about research involving human subjects or animals, it is essential to include ethical considerations to ensure that the study is conducted in a manner that is morally responsible and in accordance with professional standards. Here are some steps to help you write ethical considerations:

• Describe the ethical principles: Start by explaining the ethical principles that will guide the research. These could include principles such as respect for persons, beneficence, and justice.
• Discuss informed consent : Informed consent is a critical ethical consideration when conducting research. Explain how you will obtain informed consent from participants, including how you will explain the purpose of the study, potential risks and benefits, and how you will protect their privacy.
• Address confidentiality : Describe how you will protect the confidentiality of the participants’ personal information and data, including any measures you will take to ensure that the data is kept secure and confidential.
• Consider potential risks and benefits : Describe any potential risks or harms to participants that could result from the study and how you will minimize those risks. Also, discuss the potential benefits of the study, both to the participants and to society.
• Discuss the use of animals : If the research involves the use of animals, address the ethical considerations related to animal welfare. Explain how you will minimize any potential harm to the animals and ensure that they are treated ethically.
• Mention the ethical approval : Finally, it’s essential to acknowledge that the research has received ethical approval from the relevant institutional review board or ethics committee. State the name of the committee, the date of approval, and any specific conditions or requirements that were imposed.

When to Write Ethical Considerations

Ethical considerations should be written whenever research involves human subjects or has the potential to impact human beings, animals, or the environment in some way. Ethical considerations are also important when research involves sensitive topics, such as mental health, sexuality, or religion.

In general, ethical considerations should be an integral part of any research project, regardless of the field or subject matter. This means that they should be considered at every stage of the research process, from the initial planning and design phase to data collection, analysis, and dissemination.

Ethical considerations should also be written in accordance with the guidelines and standards set by the relevant regulatory bodies and professional associations. These guidelines may vary depending on the discipline, so it is important to be familiar with the specific requirements of your field.

Purpose of Ethical Considerations

Ethical considerations are an essential aspect of many areas of life, including business, healthcare, research, and social interactions. The primary purposes of ethical considerations are:

• Protection of human rights: Ethical considerations help ensure that people’s rights are respected and protected. This includes respecting their autonomy, ensuring their privacy is respected, and ensuring that they are not subjected to harm or exploitation.
• Promoting fairness and justice: Ethical considerations help ensure that people are treated fairly and justly, without discrimination or bias. This includes ensuring that everyone has equal access to resources and opportunities, and that decisions are made based on merit rather than personal biases or prejudices.
• Promoting honesty and transparency : Ethical considerations help ensure that people are truthful and transparent in their actions and decisions. This includes being open and honest about conflicts of interest, disclosing potential risks, and communicating clearly with others.
• Maintaining public trust: Ethical considerations help maintain public trust in institutions and individuals. This is important for building and maintaining relationships with customers, patients, colleagues, and other stakeholders.
• Ensuring responsible conduct: Ethical considerations help ensure that people act responsibly and are accountable for their actions. This includes adhering to professional standards and codes of conduct, following laws and regulations, and avoiding behaviors that could harm others or damage the environment.

Advantages of Ethical Considerations

Here are some of the advantages of ethical considerations:

• Builds Trust : When individuals or organizations follow ethical considerations, it creates a sense of trust among stakeholders, including customers, clients, and employees. This trust can lead to stronger relationships and long-term loyalty.
• Reputation and Brand Image : Ethical considerations are often linked to a company’s brand image and reputation. By following ethical practices, a company can establish a positive image and reputation that can enhance its brand value.
• Avoids Legal Issues: Ethical considerations can help individuals and organizations avoid legal issues and penalties. By adhering to ethical principles, companies can reduce the risk of facing lawsuits, regulatory investigations, and fines.
• Increases Employee Retention and Motivation: Employees tend to be more satisfied and motivated when they work for an organization that values ethics. Companies that prioritize ethical considerations tend to have higher employee retention rates, leading to lower recruitment costs.
• Enhances Decision-making: Ethical considerations help individuals and organizations make better decisions. By considering the ethical implications of their actions, decision-makers can evaluate the potential consequences and choose the best course of action.
• Positive Impact on Society: Ethical considerations have a positive impact on society as a whole. By following ethical practices, companies can contribute to social and environmental causes, leading to a more sustainable and equitable society.

About the author

Muhammad Hassan

Researcher, Academic Writer, Web developer

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• Ethical Considerations in Research | Types & Examples

Ethical Considerations in Research | Types & Examples

Published on 7 May 2022 by Pritha Bhandari .

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 behaviours, 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 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, 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 aims 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.

• 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 anonymise 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 pseudonymisation 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, counselling, 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 scientific 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.

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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How to Write an Ethics Paper

Last Updated: May 16, 2023 Approved

This article was co-authored by Emily Listmann, MA . Emily Listmann is a Private Tutor and Life Coach in Santa Cruz, California. In 2018, she founded Mindful & Well, a natural healing and wellness coaching service. She has worked as a Social Studies Teacher, Curriculum Coordinator, and an SAT Prep Teacher. She received her MA in Education from the Stanford Graduate School of Education in 2014. Emily also received her Wellness Coach Certificate from Cornell University and completed the Mindfulness Training by Mindful Schools. wikiHow marks an article as reader-approved once it receives enough positive feedback. In this case, 100% of readers who voted found the article helpful, earning it our reader-approved status. This article has been viewed 252,571 times.

Writing an ethics paper can present some unique challenges. For the most part, the paper will be written like any other essay or research paper, but there are some key differences. An ethics paper will generally require you to argue for a specific position rather than simply present an overview of an issue. Arguing this position will also involve presenting counterarguments and then refuting them. Finally, ensuring that your reasoning is valid and sound and citing the appropriate sources will allow you to write an ethics paper that will satisfy any critic.

Getting Started

• What is the main objective of the assignment?
• What specific things do you need to do in order to get a good grade?
• How much time will you need to complete the assignment?

• For example, you might begin with a topic of "ethical problems of euthanasia." This is very broad, and so forms a good starting point.

• Remember, you may refine your topic even further after you have begun writing your paper. This is perfectly acceptable, and is part of the advantage of writing a paper in multiple drafts.

• For example, you might include issues such as: "describing specifically what is meant by 'extreme, constant pain.' "Other issues might include, "the rights and responsibilities of physicians regarding euthanasia," and "voluntary versus involuntary euthanasia."
• After making this list, group or order them in some way. For example, you might imagine yourself taking the position that euthanasia is acceptable in this circumstance, and you could order the issues based on how you would draw supporting evidence and build your claim.

Developing Your Thesis Statement

• In your thesis, you should take a specific stand on the ethical issue. For example, you might write your thesis as follows: "Euthanasia is an immoral option even when patients are in constant, extreme pain."

• For example, this thesis statement is ambiguous: "Patients should not undergo euthanasia even when suffering constant, extreme pain." With how it's worded, it's unclear whether you mean that euthanasia should be outlawed or that it is morally wrong.
• Clarify your position to create a strong thesis: "Euthanasia is an immoral option even when patients are in constant, extreme pain."

• For example, in the thesis, "It is immoral for patients to choose euthanasia even when suffering constant, extreme pain," the moral burden is on the patient's actions. The author of this thesis would need to make sure to focus on the patient in the essay and not to focus on the moral implications of the doctor's actions.
• If the thesis you have written does not reflect what you want to argue in your paper, start over and draft a new thesis statement.

Conducting Research

• Ask a librarian for help finding sources if you are not sure how to access your library’s databases.
• A simple way to strengthen your argument through citations is by incorporating some relevant statistics. Simple statistics can have a major impact if presented after you've made a bold assertion. For instance, you may claim that the patient's family members would be unduly traumatized if the patient chose euthanasia, and then cite a university study that catalogued a majority of families reporting trauma or stress in this situation.
• Another helpful citation is one in which the broad issue itself is discussed. For instance, you might cite a prominent ethicist's position on your issue to strengthen your position.

• The author and his or her credentials. Does the source provide the author’s first and last name and credentials (M.D., Ph.D, etc.)? Steer clear of sources without an author attached to them or that lack credentials when credentials seem crucial, such as in an article about a medical subject. [3] X Research source
• Type of publication. Is the publication a book, journal, magazine, or website? Is the publisher an academic or educational institution? Does the publisher have a motive other than education? Who is the intended audience? Ask yourself these questions to determine if this source is reliable. For example, a university or government website might be reliable, but a site that sells items may be biased toward what they're selling.
• Citations. How well has the author researched his or her topic? Check the author’s bibliography or works cited page. If the author has not provided any sources, then you may want to look for a different source. [4] X Research source
• Bias. Has the author presented an objective, well-reasoned account of the topic? If the sources seems skewed towards one side of the argument, then it may not be a good choice. [5] X Research source
• Publication date. Does this source present the most up to date information on the subject? If the sources is outdated, then try to find something more recent. [6] X Research source

• To check for comprehension after reading a source, try to summarize the source in your own words and generate a response to the author’s main argument. If you cannot do one or both of these things, then you may need to read the source again.
• Creating notecards for your sources may also help you to organize your ideas. Write the citation for the source on the top of the notecard, then write a brief summary and response to the article in the lined area of the notecard. [7] X Research source

• Remember to indicate when you have quoted a source in your notes by putting it into quotation marks and including information about the source such as the author’s name, article or book title, and page number. [8] X Research source

Writing and Revising Your Ethics Paper

• To expand on your outline, write a couple of sentences describing and/or explaining each of the items in your outline. Include a relevant source for each item as well.

• Check your outline to see if you have covered each of these items in this order. If not, you will need to add a section and use your sources to help inform that section.

• In your first draft, focus on the quality of the argument, rather than the quality of the prose. If the argument is structured well and each conclusion is supported by your reasoning and by cited evidence, you will be able to focus on the writing itself on the second draft.
• Unless major revisions are needed to your argument (for example, if you have decided to change your thesis statement), use the second draft to strengthen your writing. Focus on sentence lengths and structures, vocabulary, and other aspects of the prose itself.

• Try to allow yourself a few days or even a week to revise your paper before it is due. If you do not allow yourself enough time to revise, then you will be more prone to making simple mistakes and your grade may suffer as a result. [10] X Research source

• Does my paper fulfill the requirements of the assignment? How might it score according to the rubric provided by my instructor?
• What is your main point? How might you clarify your main point?
• Who is your audience? Have you considered their needs and expectations?
• What is your purpose? Have you accomplished your purpose with this paper?
• How effective is your evidence? How might your strengthen your evidence?
• Does every part of your paper relate back to your thesis? How might you improve these connections?
• Is anything confusing about your language or organization? How might your clarify your language or organization?
• Have you made any errors with grammar, punctuation, or spelling? How can you correct these errors?
• What might someone who disagrees with you say about your paper? How can you address these opposing arguments in your paper? [11] X Research source

• As you read your paper out loud, highlight or circle any errors and revise as necessary before printing your final copy.

Community Q&A

• If at all possible, have someone else read through your paper before submitting it. They can provide valuable feedback on style as well as catching grammatical errors. Thanks Helpful 0 Not Helpful 1

Things You'll Need

• Word-processing software
• Access to your library’s databases
• Pencil and highlighter

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• ↑ https://owl.english.purdue.edu/owl/resource/688/1/
• ↑ https://owl.english.purdue.edu/owl/resource/553/03/
• ↑ http://guides.jwcc.edu/content.php?pid=65900&sid=538553
• ↑ http://www.writing.utoronto.ca/advice/reading-and-researching/notes-from-research
• ↑ https://owl.english.purdue.edu/owl/resource/658/05/
• ↑ https://owl.english.purdue.edu/owl/resource/561/05/

About This Article

To write an ethics paper, start by researching the issue you want to write about and evaluating your sources for potential bias and trustworthiness. Next, develop a thesis statement that takes a specific stand on the issue and create an outline that includes the key arguments. As you write, avoid using words like “could” or “might,” which will seem ambiguous to the reader. Once you’ve finished your paper, take a break for a few days so your mind is clear, then go back and revise what you wrote, focusing on the quality of your argument. For tips from our Education reviewer on how to annotate source material as you research, read on! Did this summary help you? Yes No

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3 Must Have Ethical Declarations for Journal Submission

Recently, a researcher brought up the topic of ethics in research and how a simple oversight had led to rejection. This fueled a discussion about ethical declarations and related issues at the journal submission stage, which highlighted how little authors actually know about the topic. This deficiency is underlined by a 2018 Editage Global Author Survey, which reveals that 10-25% of respondents didn’t know or were confused about ethics statements, what plagiarism means, duplicate submissions, and even determining authorship, while 31% had never heard about global ethics-related bodies such as COPE (Committee on Publication Ethics) or ICMJE (International Committee of Medical Journal Editors).

Scientific research is based on trust, integrity, and the ethical conduct of researchers across the globe. On the other hand, growing commercialization and competition is chipping away at the ethical principles that guide scientific research and publication. Renowned American computer scientist Bill Joy once said, “We can’t simply do our science and not worry about the ethical issues.” Lack of ethical declarations or any kind of ethical misconduct in research can lead to desk rejection, article retractions, hurt your academic career, and even discredit authors and their research findings. The best way for authors to avoid this quagmire is to learn more about publishing ethics and check your manuscript readiness before submission . Here’s something to get you started.

Table of Contents

Ethical declarations every author needs to submit

Ethical misconduct can result in rejection, and while authors must ensure their study is important and novel, the job does not end there. Here are the top ethical declarations needed at the submission stage.

1. Statements of ethical approval

The first ethical declaration and one of the most important aspects of research is to ensure appropriate and ethical handling of people or animals involved in the study. Any use of information, patient data, or case studies in your manuscript without approval from relevant bodies and participants is unethical and can lead to rejection.

Types of ethical approvals

Authors first need written consent (with approval number) from an ethical approval committee/Institutional Review Board as well as from the participants in the study. Where children are involved, authors should submit informed consent from their parents, guardians or legal representatives with their manuscript.

What authors should do

Statements of ethical approvals are one of the key ethical declarations on submission that indicate the privacy and consent of study participants have been maintained in research projects. So, be sure to get all the relevant approvals and permissions in advance to ensure your research study is ethically compliant, and your findings are seen as credible. If researchers are unable to obtain consent, they should eliminate all personal details of the participants from the manuscript, including in supplementary materials and visuals.

2. Declaration of interest

At time of submission, journals require researchers to submit ethical declarations of any conflicts of interest that may impede an objective and transparent editorial and review process. While not uncommon or bad, authors are responsible for identifying and reporting potential conflicts to indicate their ability to be unbiased researchers. Failure to declare competing interests, when identified, can lead to journal rejection, so be sure to add this ethical declaration to your submission package.

Types of competing interests

Conflicts of interest can arise from personal, financial, and professional affiliations or relationships. Any bias toward academic methods and processes or toward a specific political standpoint can impact the research results. Additionally, any instances where authors stand to gain financially or commercially, in terms of gifts, sponsorships, funding, or consultancy fees from companies who benefit on research being published are conflicts of interest and require an ethical declaration. Finally, competing interests that influence how articles are reviewed, research is conducted, or how papers submitted by journal staff are evaluated are also problematic.

The best approach is full disclosure, both with the journal and your funders. Submit ethical declarations that acknowledge all sources of funding or other sources of support received while conducting your research, divulge any commercial or tangible benefits you may gain by publishing your manuscript, and mention all personal or professional relationships that could be construed as conflicts of interest. If there is no potential conflict of interest, submit an ethical declaration mentioning this. Check if your journal requires a specific form to be filled, or refer to the ICMJE guidelines and use the form and ethical declaration examples provided there to create appropriate ethics statements for journal submission.

3. Manuscript submission-related ethical declarations

Some researchers may be tempted to submit to multiple journals to save time and boost their chances of acceptance, while others may have published portions of the research earlier. Authors who submit manuscripts without this ethical declaration or without disclosing this information could face duplicate publication or copyright infringement charges, which is a serious ethical offence.

Types of submission misconduct

Submitting manuscripts to multiple journals at the same time or attempting to republish content that has been published earlier without the right permissions or ethical declarations is an ethical violation. Consolidating related papers and publishing it as a larger, more comprehensive paper is seen as unethical, as is ‘salami slicing’ a research study to publish it as smaller papers to boost the publication list.

Journals require authors to submit ethical declarations disclosing any previous or pending publication of manuscript content in journal communications, conferences, or as preprints online at the time of submission. When using data (figures/tables) from published work, be sure to include signed permissions to use the content. In instances of secondary publication, authors must check and follow the ICMJE stipulated guidelines .

Research misconduct is a serious issue and researchers found guilty of it stand to lose their credibility in the academic community with little to no chance of professional advancement. This makes it crucial for authors to follow all the ethical guidelines and submit the required ethical declarations to indicate their integrity and ability to be transparent in their work. Along with these three key ethical declarations, authors must watch out for unethical authorship, data fabrication or falsification, and plagiarism well before they submit to a journal.

To ensure you’ve done everything required for submission, run your work through the comprehensive manuscript readiness check by Researcher.Life , which helps authors create submission-ready articles and maximize their chance of publication success.

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• http://orcid.org/0009-0005-3230-6746 Rebecca Evans 1 , 2 ,
• http://orcid.org/0000-0003-0940-6624 Jacinta Douglas 1 , 2 ,
• http://orcid.org/0000-0003-3899-6248 Di Winkler 1 , 2 ,
• http://orcid.org/0009-0002-8896-9117 Lee Cubis 1 , 2
• 1 Summer Foundation , Box Hill , Victoria , Australia
• 2 Living with Disability Research Centre , La Trobe University , Melbourne , Victoria , Australia
• Correspondence to Rebecca Evans; rebecca.evans{at}summerfoundation.org.au

Introduction Around the world, the disability rights movements and the social model of disability have placed emphasis on the importance of social participation for people with disability. People with physical disability who have high and complex support needs often need support to access their communities, however, very little is known about the interaction between support and social participation for this population of people. Therefore, the aim of this scoping review is to explore the literature related to the interaction between support and social participation for adults with disability and understand any existing gaps in the literature where further research may be required in order to maximise quality support and social participation.

Methods and analysis This scoping review will be conducted and reported according to scoping review guidelines outlined by Arksey and O’Malley and later modified by Levac et al , as well as the Preferred Reporting Items for Systematic Reviews and Meta-Analysis: Extension for Scoping Reviews. Thorough database searches will be conducted across MEDLINE, PsycINFO, CINAHL and Scopus. The search will be limited to papers published in English from 2013 onwards. Citations will be uploaded into Covidence and screened by two independent reviewers. Data extraction will extract data regarding participants, housing, support and study characteristics, as well as qualitative and quantitative data relevant to the research question. A narrative synthesis will be used to summarise findings. A minimum of three consultants with lived experience of disability will be engaged to review and contribute to the final scoping review paper.

Ethics and dissemination It is anticipated that the findings of this scoping review will be made available in peer-reviewed publications and also in plain language formats to ensure accessibility to a wide range of audiences. Ethics will not be required for this scoping review.

• Neurological injury
• Social Interaction
• Neuromuscular disease

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/bmjopen-2023-083102

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STRENGTHS AND LIMITATIONS OF THIS STUDY

This study will be coauthored and coproduced by people with lived experience of disability.

This study will be the first scoping review to look into the interaction between support and social participation for people with physical disabilities.

Only papers written in English from the year 2013 onwards will be considered for inclusion.

Introduction

Around the world, the disability rights movement and the social model of disability have taken prominence in order to promote the full participation of people with physical and other disabilities within society. 1 The disability rights movement asserts that people with disability should live free from discrimination and have equal opportunities and rights, including the right to live and be supported in the community, the right to paid employment and the right to inclusive education. 2 In a similar tone, the social model of disability explains that restrictions to participation do not necessarily come from a person’s direct disability impairment, but instead from the environmental barriers around them, such as inaccessible buildings or people’s negative attitudes and assumptions. 3 A common example used to describe the social model is that it is not a person’s need to use a wheelchair for mobility that prevents someone from entering a building that has stairs, but instead, it is society’s failure to instal a ramp or elevator. 4 Many governments in the Global North are beginning to acknowledge these movements by implementing disability funding systems that seek to improve areas of life, such as housing, that have the potential to present participation restrictions to people with disability if not adequately addressed. 5 For example, in Australia, the National Disability Insurance Agency now funds specialist disability accommodation (SDA) for Australians with high support needs. 6 SDA funding assists people with disability to live in homes which are appropriately accessible, meaning more Australians with disability and complex needs are being given access to housing which maximises independence and facilitates high-quality support. 6 However, the accessibility of housing and its impact on participation is a tangible concept and one that has been widely studied, with a recent study finding that accessible housing leads to improved social participation, quality of life and health and well-being outcomes. 7 Less research has focused on in-depth exploration of other factors which may impact the participation of people with disability and, specifically, people with physical disabilities and high and complex support needs. 1 8

Outside of appropriate and accessible housing, quality support is considered to be another major contributor to the quality of life of adults with disability. 9 10 Adults with physical disability may receive support from various groups of people, including informal support such as from family members, friends, advocates or peers and formal support from paid disability support workers, support coordinators and health professionals. 11–13 Research suggests that adults with physical disability who receive high-quality support have better health and well-being and are more likely to participate in society. 14 15 It is important to recognise that not all adults with disability have the same support needs. 10 Some may not require any support in their day-to-day lives while others may have very high and complex support needs, and therefore, require support 24 hours a day, 7 days a week. 16 17 The role that supports play in the life of an adult with physical disability can be heavily influenced by this requirement. 18 For adults with disability who have high and complex support needs, their supports may help them with activities such as personal care, household management and social participation. 19

Social participation often looks similar for people with and without disabilities—whether going out to restaurants and bars, visiting family and friends, going out shopping or engaging in activities such as arts, culture, travelling, education or employment. 20 For people with physical disability, increased social participation can result in benefits such as improved health and well-being, reduced mental illness, increased life satisfaction and increased quality of life. 21 22 However, as discussed by Bigby and Beadle-Brown, 23 many people with disabilities need strong support networks or programmes around them in order to ensure benefits are gained from engaging in any community or social environment. Without adequate and quality support, it can be perceived that social or community participation simply reflects being in a community, rather than of a community—a distinction emphasised by Martin Ginis et al . 24 It is for this reason that this paper uses the term ‘social participation’, which better reflects this concept as opposed to phrases such as ‘community integration’ or ‘community engagement’. 25

Despite the established importance of social participation for people with physical disability and the existing evidence that many people with disability require support to participate in the community, it appears that very few studies have sought to thoroughly investigate the interaction between support and social participation for adults with physical disability. Additionally, a recent study recommended an in-depth exploration of factors that influence social participation. 26 Therefore, the aim of this scoping review is to explore the literature related to the interaction between support and social participation for adults with physical disability and high and complex support needs and understand any existing gaps in the literature where further research may be required in order to maximise quality support and social participation.

Method and analysis

The proposed scoping review will be conducted and reported according to scoping review guidelines outlined by Arksey and O’Malley 27 and later modified by Levac et al , 28 as well as the Preferred Reporting Items for Systematic Reviews and Meta-­Analysis: Extension for Scoping Reviews (PRISMA-­ScR 29 ). It is anticipated that this scoping review will begin in the later quarter of 2023.

Identifying research question

The research question central to this scoping review is: What is the interaction between support and social participation for adults with physical disability and high and complex support needs? For the purpose of this research, high and complex support needs are defined as the support requirements of a person with disability which originate from a ‘functional impairment which has a substantial impact on the person’s independence in one or more activities in the domains of mobility, self-care, domestic life or self-management’—resulting in multiple support needs that are profound, severe, serious or intense. 7 In addition, support is defined as assistance with activities such as personal care, household management and social participation from either informal supports such as family members, friends, advocates or peers, or formal supports such as paid disability support workers, support coordinators and health professionals. 11–13 19

Identifying relevant studies (developing the search)

The search strategy has been developed in collaboration between the authors and an experienced senior research librarian. An initial search of MEDLINE was undertaken to refine the search terms and search strategy. Three core concepts were extracted from the research question and applied to the search strategy. These were (1) physical disability, (2) social participation and (3) adult. A comprehensive list of search terms was then developed for each of those concepts based on the authors’ prior knowledge, keywords contained in the titles and abstracts of relevant articles, and search strategies used in other scoping reviews with similar research questions. Concepts will be combined using the Boolean operator ‘AND’, with keywords within each concept being combined with the Boolean operator ‘OR’. It was consciously decided that the concept of ‘support’ would not be included in the search strategy due to this term being a broad-ranging concept related to many different forms of support, and searching for specific supports such as ‘family’ or ‘support workers’ may inadvertently exclude relevant articles.

A full search strategy was then developed for MEDLINE (see online supplemental appendix ), with search filters of studies only being published in the English language from 2013 onwards being applied. This search strategy will be adapted for all included databases. The databases to be used in this scoping review will include MEDLINE, PsycINFO, CINAHL and Scopus. Both a backward search of the reference list of included studies, as well as a forward search for papers which cite the included studies, will be undertaken to identify any relevant papers which may have been missed in the initial database search.

Supplemental material

Study selection, eligibility criteria.

For studies to be eligible for inclusion, they must be peer-reviewed and published in the English language. There will be no study design restrictions due to the anticipated scarcity of research in this area, however, papers will be required to have extractible empirical data. The primary or stated aim of the papers included will be aligned with the scoping review’s research question. The paper will also need to have been published no earlier than the year 2013. The last 10 years can be viewed as a point in time when the disability and support landscape changed, with a greater focus on participation and, at least in Australia, legislation to enable people with disability to get support to participate. 30 Specifically, in Australia in 2013, the National Disability Insurance Scheme (NDIS) was legislated, which enables people with disability to get the reasonable and necessary support they need to engage with their communities. 31

Inclusion criteria

Clinical population: Included research should focus on adults with physical disability (regardless of origin or co-occurring disabilities) aged 18–65 who are living in the community and have complex or high support needs.

Support population: In addition to the clinical population described above, research may also include supporters such as close others and support workers as sources of information, contributing to data surrounding the experiences of the clinical population.

Concept: Studies that report on the interaction between support (informal or formal) and social participation for adults with physical disability living in the community.

Peer-reviewed articles that are based on research from countries in the Global North (including Australia, Canada, most European countries, New Zealand, the UK and the USA 32 ).

Exclusion criteria

Participants below the age of 18 or aged 65 or above.

The lower age limit of 18 has been selected as in most Global North countries, 18 is considered the age of adulthood and typically the youngest age people would move out of home. The upper age limit of 65 or above is reflective of the upper limit of those accepted onto the NDIS—Australia’s primary disability funding scheme. 33

Participants who reside in institutions, residential aged care or hospitals.

This has been selected as exclusion criteria as people with disability who do not live in the community often have very little choice and control over their participation in the community (if any at all) and often receive minimal purposive support to do so. 34 This body of literature regarding social participation for people who reside in settings such as institutions, residential aged care or hospitals has already been established 35 36 , therefore this piece of research seeks to explore the question in the context of people with disability living in the community.

Participants who do not have a physical disability (eg, participants with intellectual disability who do not also have a co-occurring physical disability).

This has been selected as exclusion criteria as people with different types of disabilities (eg, physical, intellectual, sensory or psychosocial) often have very different support needs. 16 Therefore, including all disability types would not provide a fair or accurate comparison when investigating the link between support and social participation.

Participants who do not have high or complex support needs, and therefore, do not require high levels of support (eg, participants who have a physical disability which may typically be considered ‘mild’, such as people with single limb amputations or limb difference).

This has been selected as exclusion criteria as people who have high or complex support needs often need hands-on support in order to access the community. 37 This need in itself places different barriers and facilitators on social participation, compared with people with disability who may have lower support needs, and therefore, be able to access their community independently.

After the conclusion of the literature search, all citations will be uploaded into Covidence and duplicate references will be removed. For title and abstract screening, two independent reviewers from the research team will review the citations against the outlined inclusion and exclusion criteria.

Following the title and abstract screening, any papers that meet the inclusion criteria will have their full text independently reviewed by two reviewers from the research team. For articles that are included after a full-text review, references for those articles will be scanned to identify any other literature relevant to this scoping review, as well as a forward search for citations of included articles.

Any uncertainties during this screening process, including disagreement on article inclusion, will be discussed between the independent reviewers and an agreement reached. If required, the inclusion/exclusion criteria or search strategy may be modified or a third reviewer from the research team will be consulted if agreement can not be reached.

The results of the literature search as well as the number of articles at each stage will be outlined in a full PRISMA-ScR flow diagram. 38

Charting the data

The data extraction form will be built iteratively as screening of articles and refinement of inclusion/exclusion criteria occurs to ensure suitability to the research question and eligibility criteria. The development and completion of the data extraction form will be a collaborative process between two reviewers from the research team. The data will then be extracted by the lead author.

It is anticipated that the data extraction form will collect the following pieces of information: (1) participant characteristics (age, gender, type of disability, population type (eg, people with disability, close others, informal or formal supports, professionals)), (2) housing characteristics (living status such as group home, single-residency, living with family, etc), (3) support characteristics (type of support such as paid support workers, family, professionals and quantity of support (eg, paid support hours, level of support (such as 24/7) received/required), (4) study characteristics (author, study year, study design/methodology, sample size, country of completion, measures), (5) qualitative data and quotes relevant to the research question and (6) quantitative data relevant to the research question.

Our intention is to also undertake a quality evaluation of included articles utilising the Critical Appraisal Skills Programme, allowing the methodological rigour of included articles to be reported on. 39

Collating, summarising and reporting the results

The collating, summarising and reporting of the results will be informed by the PRSIMA-ScR checklist. 27 A descriptive summary of the scoping review will outline the number of citations screened and the number of studies included at each stage. This will be presented in a PRISMA flow diagram.

The key characteristics of the final included articles will be summarised in both table and text formats. Quantitative and qualitative data will be analysed separately, with a narrative synthesis used to summarise the findings of all included articles into themes relevant to the scoping review’s research question. This process of a narrative synthesis will allow both quantitative and qualitative data to be discussed in tandem. Additionally, any gaps in the literature identified by the included articles or the authors of this paper will be identified and discussed.

Patient and public involvement

People with lived experience of having a physical disability which results in high or complex needs will be invited to review the first draft of this scoping review and put forward feedback and suggestions. The aim will be to recruit at least three paid consultants with a diversity of experiences via the existing networks of Summer Foundation’s and La Trobe University’s Living with Disability Research Centre. Lived experience consultants will be sent an electronic copy of the scoping review draft to review at their own pace and to provide feedback in a format that is accessible to them. The objective of this consultation process will be to ensure that the scoping review is informed by the lived experience perspective, assist in identifying any literature gaps that may have been missed and provide advice on dissemination of findings.

Limitations

The primary limitation of this scoping review is that the search strategy is limited to articles in English from the year 2013 onwards. While the year 2013 is deemed an important year for change in the disability landscape, this time limit is deemed an unavoidable limitation which reduces the scope of articles to be reviewed to a quantity which can be reasonably processed by the research team. There is also a risk that very few, if any articles, may be found on the research question of interest. However, although this may prevent the research question from being answered in this particular instance, a lack of articles will also provide justification for further research into this topic of interest.

Ethics and dissemination

Ethics will not be required for this scoping review. The aim of this scoping review is to synthesise the existing literature on the interaction between support and social participation for people with physical disability and high or complex support needs. To the best of our knowledge, this will be the first scoping review in this particular topic area. It is believed that the results of this scoping review will assist in emphasising the importance of quality support in sufficient quantity in order for people with physical disabilities and high or complex support needs to feel that their social participation meets their goals and preferences. Where there is evidence of gaps in the literature, it is hoped that the scoping review will help inform future research in the area. It is anticipated that the findings of this scoping review will be made available in peer-reviewed publications and also in plain language formats to ensure accessibility to a wide range of audiences.

Ethics statements

Patient consent for publication.

Not applicable.

• Heinemann A , et al
• Australian Federation of Disability Organisation
• Lakhani A ,
• McDonald D ,
• National Disability Insurance Agency
• Gosden-Kaye EZ ,
• Winkler D , et al
• Anderson S ,
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• Downs B , et al
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• Juvalta S , et al
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• People with Disability Australia
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• Critical Appraisal Skills Programme

Supplementary materials

Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

• Data supplement 1

Contributors All authors (RE, JD, DW and LC) have made a substantial intellectual contribution. RE led the conceptualisation and completion of the review. RE, JD and DW contributed to the scope and design of the review. All authors (RE, JD, DW and LC) contributed to drafting, editing and revising the manuscript and gave approval for publication of this protocol.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests None declared.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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• Epistemic injustice, healthcare disparities and the missing pipeline: reflections on the exclusion of disabled scholars from health research
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• http://orcid.org/0000-0003-3868-5765 Joanne Hunt 1 ,
• http://orcid.org/0000-0002-0205-1165 Charlotte Blease 1 , 2
• 1 Department of Women's and Children's Health , Uppsala University , Uppsala , Sweden
• 2 Digital Psychiatry, Department of Psychiatry, Beth Israel Deaconess Medical Center , Harvard Medical School , Boston , Massachusetts , USA
• Correspondence to Joanne Hunt, Department of Women's and Children's Health, Uppsala University, Uppsala 751 05, Sweden; joanne.hunt{at}uu.se

People with disabilities are subject to multiple forms of health-related and wider social disparities; carefully focused research is required to inform more inclusive, safe and effective healthcare practice and policy. Through lived experience, disabled people are well positioned to identify and persistently pursue problems and opportunities within existing health provisions that may be overlooked by a largely non-disabled research community. Thus, the academy can play an important role in shining a light on the perspectives and insights from within the disability community, and combined with policy decisions, these perspectives and insights have a better opportunity to become integrated into the fabric of public life, within healthcare and beyond. However, despite the potential benefits that could be yielded by greater inclusivity, in this paper we describe barriers within the UK academy confronting disabled people who wish to embark on health research. We do this by drawing on published findings, and via the lived experience of the first author, who has struggled for over 3 years to find an accessible PhD programme as a person with energy limiting conditions who is largely confined to the home in the UK. First, we situate the discussion in the wider perspective of epistemic injustice in health research. Second, we consider evidence of epistemic injustice among disabled researchers, focusing primarily on what philosophers Kidd and Carel (2017, p 184) describe as ‘strategies of exclusion’. Third, we offer recommendations for overcoming these barriers to improve the pipeline of researchers with disabilities in the academy.

• Disabled Persons
• Quality of Health Care

Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/jme-2023-109837

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Introduction

People with disabilities have been described as an ‘unrecognized health disparity population’. 1 Health disparity (or health inequity) is understood as an avoidable and unjust difference in health or healthcare outcomes experienced by social, geographical or demographic groups with a history of socioeconomic, political or cultural discrimination and exclusion. 1 2 Despite the passage of landmark disability legislation, including the UK Equality Act 2010, the US Americans with Disabilities Act 1990 and the United Nations Convention on the Rights of Persons with Disabilities (adopted in 2006), disability-related health and healthcare disparities persist. Disabled people report lower levels of well-being on average compared with non-disabled people, are at increased risk of physical and mental comorbidity and are more likely to die younger. 1–3 There are multiple reasons as to why health disparities persist along the lines of disability; however, prejudicial biases, engendering structural barriers to care, play a critical part. For example, recently, the WHO 2 reported that people with disabilities are significantly more likely to perceive discrimination and stigma in healthcare contexts compared with non-disabled people. This is supported by a wealth of literature from across the world revealing institutional, physical and attitudinal healthcare barriers for disabled people, including medical professionals’ ambivalence or lack of understanding towards disability, lack of confidence vis-à-vis providing quality care and physically inaccessible clinics and clinical equipment. 4–7

Health and healthcare-related disparities also intersect with broader social disparities. For example, people with disabilities are less likely to be employed and earn less when they are in work, despite the fact that disability incurs higher living costs. 2 In the UK, government data from 2021 reveal a disability employment gap of 28%, 8 with a disability pay gap of 14%. 9 Recent figures from the US Bureau of Labor Statistics 10 indicate that the unemployment rate among disabled people is over twice the rate for non-disabled people, with similar trends across other countries. 2 Perhaps unsurprisingly, disabled people are also more likely to live in poverty than their non-disabled counterparts. 2 11 Compounding matters is structural disablism: discrimination and stigma (woven into collective attitudes, organisational policies, legislation and infrastructure) that often go unnoticed by non-disabled people but can take a serious toll on individuals living with disabilities. In 2023, the UK’s Office for National Statistics reported that the suicide rate was higher among people with disabilities than any other demographic group. 12

To better understand and address such disparities, carefully focused research is needed. 2 In this regard, people with lived experience of chronic illness and disability can offer unique insights that can strengthen and help drive richer research, where disabled people are positioned equally as co-researchers, as opposed to the traditional dynamic of disabled ‘research subject’ to be passively studied. Through first-hand experience, via experiential or standpoint epistemology, 13 disabled researchers are often well positioned to understand how health-related policies and practices (informed through largely non-disabled research communities) may unwittingly harm or otherwise disadvantage disabled persons. 14 Researchers with disabilities may also be more motivated and well placed to perceive knowledge gaps, and to pose penetrating and uncomfortable questions necessary to galvanise change. Embracing viewpoint diversity, and the input of disabled researchers, could therefore represent a powerful pathway to improve understanding and to develop more inclusive health and healthcare policy and practice.

The history of the disabled people’s movement within the UK, 15–17 whereby disabled scholar-activists entered the academy and contributed to profound changes in social practice and policy, constitutes an exemplar of the potential value of viewpoint diversity and disability standpoint, the legacy of which continues today, most notably within disability studies, but also more widely within critical social sciences and humanities. 18–20 However, within health sciences—particularly those tightly tied to science, technology, engineering and mathematics (STEM)—there appear to be greater barriers to including disabled scholars and integrating disabled knowledges. 21–23 For example, research shows that the percentage of people with a declared disability is lower in STEM subjects relative to non-STEM subjects at first degree, postgraduate level and within the academic workforce. 22 Moreover, a 2020 data analysis brief from the UK All-Party Parliamentary Group on Diversity and Inclusion in STEM 23 reported that the UK STEM workforce had a lower representation of disabled people relative to the rest of the UK workforce (11% vs 14%). Here, it is noteworthy that the analysis used the wider definition of STEM, that of ‘STEM(H)’ which specifically includes health and related fields. 23 Such exclusions are further compounded by intersectionality, the intersection and co-constitution of multiple forms of social (dis)advantage. 24 Indeed, the intersection of disability with other minoritised identities 19 21 23 is yet another reason to promote disability inclusion within the academy and beyond.

Despite the potential benefits that could be yielded by greater inclusivity, in this paper we describe barriers within the UK academy confronting disabled people who wish to embark on health research. We do this by drawing on published findings, and via the lived experience of the first author (hereafter, ‘JH’) who has struggled for over 3 years to find an accessible PhD programme in the UK as a person with ‘energy limiting conditions’ (ELC) 25 26 who is largely confined to the home. First, we situate the discussion in the wider perspective of epistemic injustice in health research. Second, we consider evidence of epistemic injustice among disabled researchers, in particular those with ELC, by situating this in the legal context in the UK, and by detailing the nature of barriers experienced. Third, we offer recommendations for overcoming these barriers in the academy.

A note on nomenclature: we recognise that person-first language (‘people with disabilities’) is the globally prevalent form. 18 As a self-identifying disabled person broadly ascribing to the British social model of disability, 16 17 JH tends towards identity-first language (‘disabled people’). Therefore, while recognising the semantic and ideological divergences embedded within different forms of disability-related language, 18 we have chosen to adopt both forms in this paper to reflect our case for viewpoint diversity.

Additionally, while recognising the heterogeneity of disability and disability-related exclusions, 19 we focus on ELC: health conditions that share energy impairment as a key experience and substrate of disability discrimination or disablism.

ELC include but are not limited to ‘medically unexplained’ or contested conditions such as myalgic encephalomyelitis/chronic fatigue syndrome, alongside ‘rare’ conditions such as Ehlers-Danlos syndromes. 25 26 Since ELC do not conform to socially prevalent (fixed, non-fluctuating, easily identifiable) stereotypes of disability, disablism largely manifests as clinical and social disbelief, resulting in ELC being poorly recognised and poorly researched through the lens of disability rights and diversity, equity and inclusion (DEI). 25 26 Equally, while we focus on exclusions within the academic space, it is important to note that people with ELC (and wider disabled communities) are subject to marginalisation and exclusion in all social arenas, including education, employment and the healthcare system itself. 25–28 Moreover, measures to improve physical inclusion (such as wheelchair-accessible environments) are oftentimes ineffective or insufficient among people with ELC who are confined to the home, thus furthering marginalisation of this group. In this respect, we recognise that people diagnosed with mental health conditions (notably but not limited to agoraphobia or social anxiety) may be confined to the home and are subject to similar dynamics of disability-related disbelief and associated exclusions as evidenced in the ELC arena. 29–31 Therefore, while we focus on ELC, the following discussion and recommendations for academic inclusion may benefit others with ‘hidden’ or poorly recognised health conditions.

The importance of ELC-specific research is arguably amplified by the emergence of long COVID, another condition that sits well within the ELC umbrella. 26 The concept of ELC arose from research led by disabled people within and outside of the UK academy 25 26 and thus represents an example of the potential value of ‘disability standpoint’ in contributing to health and healthcare-related research gaps. Nevertheless, there is very little peer-reviewed academic literature explicitly focusing on ELC (for recent exceptions see ref 32–34 ). To our knowledge, and motivating this paper, there is no research exploring academic exclusions in the ELC arena through a lens of epistemic injustice.

Epistemic injustice

Epistemic injustice refers to a variety of wrongs perpetrated against individuals in their capacity as a knower or contributor to knowledge. According to philosopher Miranda Fricker, 35 it takes two forms: testimonial injustice and hermeneutic injustice. The former arises when an individual is unfairly discriminated against with respect to their capacity to know or contribute to knowledge. This form of injustice often arises because of negative stereotypes about a demographic group. For example, in the case of disability, testimonial injustice may take the form of global, unjustified prejudices about the intellectual or bodily capacity of disabled individuals to contribute to knowledge. Disabled people may, for example, be seen as lacking the stamina, strength, reliability or acuity to offer useful insights. Philosophers of medicine Ian Kidd and Havi Carel 36 sum it up as a ‘pre-emptive derogation of the epistemic credibility and capacities of ill persons’ that involves ‘a prior view, for instance, of ill persons being confused, incapable or incompetent, that distorts an evaluation of their actual epistemic performance’. Testimonial injustice can take the form of implicit or explicit discrimination on the part of the hearer, leading to an outright dismissal or discrediting of the contribution of individuals to discussions in which they might otherwise offer valuable insights.

As others have argued, many people with disabilities may have acquired valuable knowledge about their condition through lived experience that renders them experts on aspects of their illness, the nature of health services and the quality of provider care. 27 37 38 Notwithstanding, it is also important to clarify that living with an illness need not automatically afford epistemic privilege. Rather, the point is that a finer awareness is needed to move past unhelpful stereotyping, to appreciate the contributions to knowledge that individuals may make. This, with a view to avoiding global or unwarranted assumptions about the credibility of individuals’ contributions to knowledge formation activities.

Hermeneutic injustice represents a wrong which Fricker describes as the set of structural and social problems that arise because ‘both speaker and hearer are labouring with the same inadequate tools’. 35 This form of injustice arises when individuals are precluded from accessing, or can only partially access, resources that could improve understanding about their experiences. Because of this asymmetry, those with unequal access to resources can suffer additional disadvantages that serve to further undermine their status and impede understanding about their condition. Kidd and Carel describe two kinds of means—which they dub ‘strategies’—by which hermeneutic injustice can be explicitly or implicitly perpetuated. 39 The first includes a range of structural barriers to participation in practices whereby knowledge is formed. Kidd and Carel argue that these can encompass physical barriers and subtler exclusions such as employing specific terminologies and conventions that serve to exclude the participation of disadvantaged people who might otherwise usefully contribute to knowledge. 39 A related, second strategy of exclusion, they argue, is the downgrading of certain forms of expression (such as first-person experiences, affective styles of presentation or vernacular) as evidence of the diminished credibility of the marginalised group. This demotion, Kidd and Carel contend, serves to further frustrate the efforts of the disadvantaged individual to participate, compounding ‘epistemic disenfranchisement’. 39 In this way, hermeneutic injustice can lead to a vicious, self-perpetuating cycle of testimonial injustice.

In what follows, we focus primarily on evidence of hermeneutic injustice, including strategies of exclusion among disabled researchers with ELC, who are largely or completely confined to the home and who seek to contribute to knowledge formation activities within the UK academy. Before we delve into the evidence, however, we offer some contextual caveats. First, it is important to offer some legal context with respect to disability rights. On the most charitable analysis, we acknowledge that not every individual who is disabled can expect to participate in every research context. For example, some barriers—such as the design or location of laboratories—might preclude full participation among some disabled researchers even with significant adaptations. Our aim then is to examine forms of epistemic injustice that pertain to ‘reasonable adjustments’, a legal term that we will unpack. Since our focus is on barriers to people with disabilities in British universities, we focus on UK legislation; however, what we have to say doubtlessly applies to other countries and regions.

Evidence of epistemic injustice among disabled researchers

Background on uk disability legislation.

Under Section 20 of the UK Equality Act 2010, higher education providers in England, Scotland and Wales are legally bound to provide ‘reasonable adjustments’ for people with disabilities who require them. 40 Section 6 of the Act defines disability as the experience of an impairment that has a ‘substantial’, long-term adverse impact on a person’s ability to engage in daily activities. Section 20 clarifies that the duty to make reasonable adjustments exists where any provisions or criteria offered or required by education providers place disabled people at a ‘substantial’ disadvantage relative to non-disabled people. 40

Health scholars have identified vagueness and therefore ambiguities in how qualifiers such as ‘substantial’ and ‘reasonable’ are interpreted. 41 Moreover, it has been contended that ‘reasonable adjustments’ rely on a non-disabled and potentially ableist perspective of what is reasonable, while also placing the burden to prove eligibility for adjustments onto disabled people, thus individualising the structural problem of normalised discrimination. 42 As previously outlined, ELC are poorly recognised as forms of disability, and research demonstrates that people living with diagnoses that can be positioned as ELC struggle to gain the recognition necessary to obtain reasonable adjustments. 32–34 43 Section 19 of the Equality Act 2010 explains that indirect discrimination occurs when one party applies a provision, criterion or practice that puts a person with a protected characteristic (such as disability) at a substantial disadvantage when compared with people without that protected characteristic. 40 44

The Equality Act allows for scenarios where discrimination may be justified (known as ‘objective justification’) in cases where providers can demonstrate that their policies or provisions constitute ‘a proportionate means of achieving a legitimate aim’. 40 Among the considerations about what might constitute a proportionate means are the size of the organisation, the practicalities and costs involved. 44 However, these are seldom explicitly articulated as a justification for the status quo, and the resulting ambiguities (which ultimately can only be resolved by tribunal or court) mean—as we will next find out—that disability discrimination may inadvertently become normalised.

Evidence of strategies of exclusion

Despite an ostensible increase in DEI policies within the academy, 45 46 there exists considerable literature demonstrating experiences of physical and attitudinal barriers to participation in academic research among disabled students and academics, including those with diagnoses that sit within the ELC umbrella. 29 31–34 43 46 There is also evidence that disability-related inequities in higher education persist in terms of degree completion, degree attainment and progression onto skilled employment or postgraduate study, within and beyond STEM. 21 22 47 48 The experience of JH is that such disparities are deeply entwined with physical and attitudinal barriers to full epistemic participation within the academy. Drawing on research findings and situating these against the lived experience of JH, we now explore evidence of strategies of exclusion for disabled researchers that, we argue, could contribute to epistemic injustice.

Studies that reveal barriers to academic participation, among people with ELC and disabled people more broadly, focus on two principal scenarios: (1) experiences of higher education students who can attend ‘on campus’ but require accommodations, 29 33 43 and (2) experiences of academics (from PhD study level upwards) navigating workplace barriers pertaining to reasonable adjustments, employment and career progression opportunities. 31 34 46 49 Where these barriers occur, we suggest they point to evidence of hermeneutical injustice that may also be underpinned by testimonial injustice. Indeed, chief among themes across such literature is that of ableism, understood as ‘a cultural imaginary and social order centred around the idealised able-bodied and -minded citizen who is self-sufficient, self-governing and autonomous’ 50 ; this ‘social order’ is founded on global prejudices about disabled bodies and minds. 50 Reports of academic ableism are evidenced as manifesting through, inter alia, a lack of accessible buildings and equipment, institutional inability or unwillingness to facilitate disability-related accommodations, and lack of familiarity (or consensus) among faculty and non-academic staff as to what constitutes disability-specific DEI practice and policy. 31 43 45 46 Additionally, increasing literature probes the creeping neoliberalisation of academia, which is contended to intersect with and perpetuate ableism, most notably though institutional normalisation of competition and hyperproductivity as a reflection of ‘excellence’. 31 46 Relatedly, and notably among students or academics with health conditions that can be positioned as ELC, the question of whether or how to disclose disability and implications of (non)disclosure is receiving critical attention. 21 29 31 33 34 43

Furthermore, as previously outlined, scarce attention has been paid to ELC explicitly, especially among people with ELC who are largely or completely confined to the home, yet may wish to continue within or enter academic spaces and thus require remote access. JH’s experience is that some of these people are not only marginalised within the academy but may be excluded from accessing it altogether. This, it would appear, is owing to a failure of institutions to facilitate remote access programmes. Here again, to understand how strategies of exclusion operate, we must turn to legal considerations. In terms of what might be considered ‘reasonable’, the willingness of research institutes to extend remote access to students and faculty during successive lockdowns owing to the SARS-CoV-2 pandemic 31 51 52 suggests that failure to extend such accommodations to disabled people who depend on them, and especially where research can be conducted from home, would be difficult to justify.

Yet, such remote access tends to be considered at best an ‘adjustment’ to preferred or ‘normal’ (non-disabled) practice, and provision appears to be patchy and poorly signposted; lack of clarity over which research institutes offer remote delivery programmes may thus constitute the initial hurdle. Some universities appear to offer remote PhDs within some disciplines but not within others, and the exclusions do not appear to be related to pragmatics such as requiring laboratory access. For example, according to JH’s enquiries, and information received, one UK research institute and member of the Russell Group (representing UK leading research-intensive institutions) offered distance learning PhD programmes in 2021 and 2022 within psychology, but not within sociology. For added context, JH’s research interests are interdisciplinary but primarily straddle disability studies (typically sited within academic schools of sociology and faculties of social sciences) and psychology. This is with a view to researching disability-affirmative, socioculturally and politically cognisant approaches to psychotherapy practice and policy. However, in academic fora, psychology and psychotherapy (often aligned with health sciences faculties) foreground heavily medicalised understandings of disability, and JH’s experience has been that psychology departments have not been open minded or welcoming vis-à-vis the prospect of integrating sociocultural and political perspectives, as per disability studies. In practice, this has meant that JH’s endeavours to find an accessible PhD have been limited to the purview of sociology. These disciplinary exclusions arguably represent the legacy of the reluctance of psychology, wider health sciences and life sciences to embrace disability in all its diversity. 21–23 50

In response to an enquiry as to why the above institution did not offer remote access PhDs in disability studies/sociology, the postgraduate admissions team informed JH: ‘All our PhD students undertake mandatory units which are only delivered in person’ (email, 10 February 2022). It is unclear how these mandatory units differ from units offered on remote access programmes. Indeed, a recurring motif throughout JH’s enquiries across various UK institutions is that further probing about potentially exclusionary policies results in ambiguous responses, or no response at all. Reasons for lack of remote access offered by other institutions included a mandatory requirement for direct (on-campus) contact with the PhD supervisor or the need to participate in onboarding sessions face to face on campus. However, lack of justification about why this was necessary was not offered.

Again, it might be expected that institutional willingness to provide remote access during lockdowns would serve as a precedent for remote access to become the norm rather than the exception. 46 However, in response to JH challenging lack of remote access provision on these grounds, the reply from the admissions team at another Russell Group university was as follows:

While during the last year some teaching and supervision has taken place online this is a temporary measure and not part of a formal distance learning course. Some supervision and teaching is also now taking place back on campus in person again. All ‘on campus’ programmes are subject to government mandated attendance requirements. (email, 28 January 2022)

When JH requested more details regarding these government-mandated attendance requirements, the admissions team declared that the enquiry would be passed onto another point of contact. Over 2 years later, no further details have been forthcoming. Ad hoc adjustments pertaining to remote delivery might be possible at some institutions, but it seems conceivable that these may be dependent on the supervisor’s individual preferences rather than policy, perhaps permitting prejudicial judgements about disability to interfere with decision-making.

Furthermore, for those fortunate enough to find a supervisor willing to ‘accommodate’ them, additional strategies of exclusion arise pertaining to funding via doctoral training programme (DTP) and research council consortiums. For example, a representative of the UK White Rose social sciences DTP 53 (covering seven UK higher education institutions in Northern England) informed JH that, in accordance with Economic and Social Research Council (ESRC) policy, disabled students confined to the home are not eligible to be considered for funding. Further digging revealed that this policy is not limited to the White Rose DTP; for example, the UK Midlands Graduate School DTP, 54 covering a further eight UK higher education institutions, lists the same exclusion criteria on its website at time of writing. When JH challenged the White Rose DTP’s policy on grounds of (dis)ableism, a representative forwarded the following response from the ESRC:

UKRI [UK Research and Innovation, non-departmental body of the UK government responsible for funding research] terms and conditions confirm that UKRI funded students must live within a reasonable travel time of their Research Organisation (RO) or collaborative organisation to ensure that they are able to maintain regular contact with their department and their supervisor. This should also ensure that the student receives the full support, mentoring, access to a broad range of training and skill development activities available at their RO, as well as access to the resources and facilities required to complete their research successfully and to a high standard. Our expectation also reflects that we want to avoid students studying in isolation […] (email, 15 December 2022)

In light of the considerable evidence that scholars across many disciplines can work remotely, the assumption that disabled people cannot research to a ‘high standard’ while confined to the home is problematic. Additionally, the reasoning around avoiding isolation, while likely well intended, does not hold much weight from JH’s standpoint. Many disabled people frequently experience significant physical and emotional isolation through navigating a (dis)ableist society and develop numerous strategies (including use of remote access technology) to mitigate this; in this respect, they may even be considered ‘experts by experience’ in resiliently striving to manage isolation. 51 55 56 Social media, for example, is used by many disabled people to connect with others, share ideas on managing health conditions and disability discrimination and develop collective advocacy and activism initiatives. 55 Refusing to offer remote access on (partial) grounds that disabled people may not be able to cope with the ensuing isolation risks infantilising people with disabilities, and withholds one of the very tools that can facilitate inclusion and thus counter isolation.

Moreover, literature suggests that being on campus does not necessarily prevent disabled people from experiencing or overcoming isolation, notably emotional isolation or alienation arising from lack of accommodations and thus feeling ‘unwelcome’ or ‘less than’. 33 46 The ESRC’s reasoning would therefore appear to arise from a non-disabled perspective (or at least, a perspective not attuned to certain facets of disability culture). Funding-related barriers are aggravated by the general lack of other funding opportunities for disabled students. For example, while scholarships for other under-represented groups are justly offered across many institutions, 57–59 often with emphasis on recruiting traditionally marginalised candidates, similar much-needed initiatives for people disadvantaged through disability are conspicuously absent. This is particularly important to address since disability and economic disadvantage are entwined in a complex manner, 2 11 and because, as previously noted, disability is intersected with other forms of social (dis)advantage. 19 21 24 28

It is worth emphasising that the exclusionary practices pertaining to health-related research, as discussed here, may be more pervasive and entrenched than we have presented. Discussing the impact of academic ableism, Brown 46 notes that disability disclosure rates, though on the increase in undergraduate admissions, drop between undergraduate and academic employment level. Brown identifies two factors that might explain this: (a) disabled academics may avoid disclosure for fear that declaring disability would impede their career, and (b) disabled students may simply drop out of the academy. As the foregoing demonstrates, JH’s experience suggests that the second factor may be entwined with disabled students being excluded from the academy because they cannot meet ‘on campus’ attendance requirements. It is currently unknown how many fledgling academics with disabilities have been excluded from the academy owing to discriminatory policies and academic culture, but it seems likely that JH’s case is not exceptional. Recent research recounts that some disabled faculty are being refused remote working arrangements as lockdown accommodations begin to revert to ‘normal’ practice. 60 For disabled researchers in perpetual lockdown, such refusals might result in experiences such as those detailed here remaining unknown and thus unaddressed.

In summary, where a ‘leaky pipeline’ exists vis-à-vis academic representation of some historically oppressed groups, 61 62 it appears that there exists no pipeline at all for a subgroup of disabled people who cannot leave their homes due to a combination of body/mind restrictions and lack of social provisions such as healthcare. Yet, disadvantages created by refusing remote access accommodations to scholars with disabilities who are confined to the home are certainly substantial. Beyond the potential loss to collective wisdom, the hermeneutical injustice perpetuated by barriers to education and employment among disabled people results in what Kidd and Carel describe as a ‘double injury’, 39 since it leads to significant ramifications for the psychosocial well-being and financial security of those excluded.

Conclusions and recommendations

Despite an ostensible increase in commitment to DEI policy and practice, the academy is far from an inclusive space for disabled people. In the case of disabled people who are unable to leave the home, we might better speak of outright exclusions as opposed to marginalisation. The above discussion has demonstrated that various strategies of exclusion operate within the academy that serve to exclude some people with disabilities ‘from the practices and places where social meanings are made and legitimated’. 39 Such exclusions risk further marginalising an already hermeneutically marginalised group, with concomitant psychosocial, occupational and financial harms. Additionally, these exclusions incur a loss of collective wisdom that adversely impacts the development of inclusive, safe and effective healthcare practice and policy.

Although we urge the importance of universities facilitating remote access to disabled scholars, we add a note of caution. First, a remote access academy should be offered in complementarity with, as opposed to an alternative to, ensuring accessibility of academic buildings and equipment, or to otherwise supporting disabled people to attend on campus. This is especially important since we also acknowledge that remote access is not a solution for all disabled people. 52 63 Of note, while remote access can be understood as an assistive technology that helps support the health, well-being and social inclusion of people with disabilities, 2 the digital divide means that disabled people are also less likely to be able to access this technology compared with their non-disabled counterparts. Such marginalisation is owing to lack of devices, broadband connectivity or reduced digital literacy, underpinned by financial, social and educational disparities as already discussed. 1 2 63 Our promotion of remote access as an inclusivity tool does not negate the need to address this divide. Nevertheless, recent research has shown that a leading UK online education provider (University of Derby) has three times as many disabled students as the national average, 30 suggesting that remote delivery of academic programmes can be a significant facilitator of DEI. We therefore conclude by offering recommendations with a view to building on such strategies of inclusion.

Given the lack of familiarity vis-à-vis disability-specific DEI practice and policy, as reported in literature 31 45 46 and as experienced by JH, our first recommendation is for formalised disability equality training and education initiatives that specifically take account of people with ELC and those confined to the home. Since report of such training reinforcing disability-related stereotyping exists, 31 there should be greater emphasis on co-producing such resources with people with disabilities, including those confined to the home who are often excluded from public policy-making. Such initiatives, which could also beneficially target personnel involved in research councils and DTPs, should address implicit personal and organisational biases, facilitate understanding of how current policy and practices perpetuate (dis)ableism and promote a proactive approach to equity and inclusion, specifically in the case of people confined to the home. Disabled researchers and disability studies scholars have argued that an institutional culture change is necessary to move beyond a perfunctory engagement in, or basic legal compliance with, DEI initiatives; a foregrounding of the social model of disability and universal design principles has thus been proposed in developing DEI policy and practice. 29 31 46 The social model upends academically prevalent (individualistic) representations of disability and reasonable adjustments, by placing the onus for change on social structures and institutions as opposed to the people who are discriminated against. 16 17 In the case of ELC, we suggest that the social structures requiring greatest change to facilitate inclusion are attitudinal contexts, most notably disbelief. 24 25 In complement to the social model, application of universal design tenets to academic contexts, which involve building ‘accommodations’ into academic standard and managing disability-related diversity proactively as opposed to reactively, 29 31 46 should be extended to remote access. In practice, this means reducing the likelihood that disabled people have to ask and prove eligibility for reasonable adjustments. 42

Second, we recommend greater institutional transparency, including clear guidance for researchers with disabilities, vis-à-vis remote working policies. For many research and study programmes, online library access, supervision and other meetings represent acceptable accommodations, if not candidates for integration into academic standard as a complement to on-campus delivery. Such accommodations should be clearly signposted and, where remote working is not possible or government mandates apply, both transparency and strong justifications are required. In this regard, an institution outside of the UK has set a precedent. Uppsala University in Sweden has welcomed JH as research affiliate in the Department of Women’s and Children’s Health, operating entirely via remote access. This approach, which embraces remote working as if it were standard practice (as per universal design principles), is invaluable in challenging the prevalent yet exclusionary academic notion of dominant (on-campus) practice and policy as ‘normal’ and ‘ability neutral’. It thus serves as an exemplar for disability-related best practice for UK institutions.

Third, the current funding system requires considerable revision to better include people with disabilities who are confined to the home. In cases where research projects can be conducted remotely, there is surely no justification for exempting this group of disabled people from being eligible to apply for grants and PhD stipends. As per our above recommendations for remote accommodations, information on funding eligibility should be easily accessible, with strong and transparent rationale for any exclusions. Additionally, existing initiatives to ring-fence funding for researchers from minoritised groups to study health-related inequities 64 should be extended to include disabled people. Without such measures, much-needed research might never be conducted. This article, which has arisen from disability standpoint, and both disability and academic allyship, has indicated a considerable research gap pertaining to how disabled students or academics confined to the home experience barriers to health-related research. With a view to addressing this research gap with the added value of disability standpoint, funding opportunities must facilitate the inclusion of disabled researchers. Yet, while some under-represented groups are supported through funding-related DEI schemes, 64 disability is often overlooked.

Finally, we recommend a more formalised and universally applied academic DEI monitoring and ombudsman scheme, both to assess DEI-related shortcomings and to support minoritised researchers in raising concerns. Disabled scholars have suggested using Disability Standard (a form of benchmarking used in business to assess inclusivity and accessibility) to analyse gaps in disability-related DEI practice and policy 31 ; practical application across UK universities appears very limited. Existing schemes to promote DEI within the education sector should ensure that disability, including disabled people confined to the home, is represented and consider how institutional compliance can be secured. ‘Advance HE’ is a UK non-governmental body that promotes excellence in higher education, an objective the body acknowledges as entwined with DEI. 65 While DEI ‘international charters’ pertaining to gender and race exist with a view to encouraging providers to commit to inclusion of under-represented groups, 65 an equivalent charter specifically for disability does not exist. Here again, we recognise that different forms of discrimination intersect and that race and gender shape disability. 2 21 28 Moreover, while we do not mean to overlook recent efforts among Advance HE and other bodies to include disability in DEI initiatives, 66 the voluntary nature of many of these initiatives (which ‘encourage’ higher education institutions to address more fully disability-related DEI) will likely allow the inequitable status quo to persist. Seeking to ground a collective institutional commitment to disability inclusion within legislation, or at the very least within a transparent ‘award’ system as with DEI initiatives pertaining to other under-represented groups, 65 would likely lend more gravitas to such schemes and ‘nudge’ research institutes towards greater accountability.

In summary, insights from scholars with disabilities can help to inform more inclusive, safe and effective health-related interventions, with further benefits for social inclusion. Current academic structures deny opportunities to the very people who are well placed to identify and research the most overlooked problems in our health systems. If we truly prize DEI, the academy must become more accessible to disabled people.

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X @JoElizaHunt, @crblease

JH and CB contributed equally.

Contributors Both authors contributed equally to all aspects of the paper. As corresponding author, JH acts as guarantor.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests None declared.

Provenance and peer review Not commissioned; externally peer reviewed.

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• Response to ‘Randomised crossover study on pulse oximeter readings from different sensors in very preterm infants’ by Maiwald et al
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• Vikrant Sharma ,
• Steven J Barker ,
• Augusto Sola ,
• Daniel Cantillon ,
• Rebecca Sorci ,
• William C Wilson
• Masimo Corporation , Irvine , California , USA
• Correspondence to Dr William C Wilson; william.wilson{at}masimo.com

https://doi.org/10.1136/archdischild-2024-327165

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• Neonatology
• Intensive Care Units, Neonatal

We read with great interest the study of Maiwald et al , 1 which compared pulse oximeter saturation (SpO 2 ) measurements and the proportion of time spent within the designated SpO 2 target range (90%–95%) using three Masimo sensors in extremely preterm infants. However, we disagree with the authors’ stated conclusions that Low Noise Cabled Sensors (LNCS) are preferable to Red Diamond Signal Extraction Technology (RD SET) sensors or that the data reveal a concern to clinical care in neonates. This interpretation is not supported by the data shown in the paper, which did not include arterial blood saturation (SaO 2 ) values, and is impacted by additional methodology shortcomings.

The authors’ conclusions de-emphasise the importance of sensor accuracy in SpO 2 targeting. Indeed, clinicians should adjust their management protocols to use the pulse oximeter sensor that most closely reflects the true SaO 2 values. The newer RD SET sensor is designed with improved accuracy specifications (1.5% root-mean-square error [A RMS ]), and has been validated against actual blood SaO 2 values. When targeting tighter ranges, higher precision is of importance.

Besides failure to use SaO 2 data to determine accuracy, the authors did not reference shielding measures. When comparing multiple sensors simultaneously, it’s important to use optical shielding to prevent sensor-to-sensor crosstalk. 2 Furthermore, the data presented in supplemental figures raise concerns about SpO 2 stability and outlier treatment in the statistical methods used.

We did find the authors’ graphical illustration of counts for all SpO 2 values to be instructive. In review of this figure (annotated in figure 1 ), the RD SET sensor clearly shows a tighter distribution of SpO 2 values, that (contrary to authors’ conclusions) is most useful to safely guide fraction of inspired oxygen (FiO 2 ) titration in premature infants. The figure provided histograms of SpO 2 values from the three sensors studied, and showed RD SET (dashed line) provided a narrower distribution with a clearer peak in the histogram. In the absence of a true SaO 2 reference to make an accuracy statement, the tighter distribution of SpO 2 values using the RD SET implies that it would be best for SpO 2 targeting protocols, since FiO 2 values are titrated to changes in SpO 2 values.

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Counts of SpO 2 values per sensor in all infants. The peak count (mode) indicates the difference (bias) between sensors is ~1% (blue), and taking the top 10% of peak counts, the RD with higher precision shows an SpO 2 range spread of ~2% (green) versus ~4% for LNCS (red). Adapted from Maiwald et al , 2023. 1

In summary, we found the conclusions stated by Maiwald et al 1 are prone to misrepresentation, potentially diverting clinician focus from recent performance improvements in pulse oximetry. In particular, they could drive neonatologists away from using RD SET, when neonatologists should be encouraged to use this sensor due to its increased accuracy. All three Masimo sensors (RD SET, LNCS and PPG) can be safely used to monitor neonates. However, RD SET represents industry leading accuracy (1.5% A RMS ), that has translated into a tighter distribution of SpO 2 values observed by these investigators in their SpO 2 -targeting protocol.

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• Maiwald CA ,
• Schwarz CE ,
• Böckmann K , et al
• Kyriacou PA

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests VS, WCW and DC are full-time paid employees of Masimo. AS and SJB are part-time employees for Masimo.

Provenance and peer review Not commissioned; internally peer reviewed.

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Financial Statement Analysis with Large Language Models