Ethics (Studies with Human Participants)

A study in which information and data is gathered directly from human beings

Application

This standard applies to studies in which one or more human beings other than the researchers take part in the research (e.g. Action Research, Case Study, Grounded Theory, Qualitative Surveys, Experiments, Questionnaire Surveys).

Specific Attributes

Essential Attributes

  • describes all plausible, non-trivial potential risks or harms to participants (if any)
  • describes any steps taken to mitigate risks or harms
  • explains how benefits of the research justify any non-trivial risks or harms
  • explains how participants were recruited
  • explains the compensation (if any) offered for participation and how coercion was mitigated
  • explains how participants' free, individual, informed consent to participate was obtained1
  • explains how participants' privacy and reputation was respected in the conduct and reporting of the research.2
  • explains how data about or supplied by participants was protected in the conduct of the research3
  • explains the permissions given by participants for publication and sharing of their data by the researchers, and the permissions given by participants for others to use this data in future
  • states any barriers to participation in the research process and EITHER justifies them OR explains how they were minimized4

Desirable Attributes

  • cites (with application number) approval of a national, institutional, or other appropriate scholarly ethical review board
  • cites the reference ethics framework(s) within which the work was conducted5)
  • discusses justice, ethics, diversity and inclusion issues arising from eligibility and participation
  • explains how the impact of the research process on participants was considered
  • explains, where relevant, how risks to the researchers themselves were mitigated in the conduct of the research
  • where the research refers to identifiable persons (other than participants), explains how their privacy is respected and protected (since they have not formally consented to participation)

Extraordinary Attributes

  • supplementary materials include a complete application to a scholarly ethical review board and documentation of its approval

General Quality Criteria

Research should balance the anticipated benefits of a study with the potential risks and/or harms to participants, minimizing risk or harm wherever possible. Studies involving human beings should respect participants' rights and abilities to decide whether to participate and/or withdraw, on the basis of full information about the risks and benefits of participating, the measures that will be taken to protect them (including their privacy and reputation), and where appropriate, measures to protect their organization(s).

Antipatterns

  • Willful blindness to risks and harms to participants; justifying risks and harms on the basis that research is generally beneficial rather than in respect of benefits of the particular study; downplaying risks and harms during recruitment, consent or reporting.

Examples of Acceptable Deviations

  • Potentially damaging the reputation of a named organization by responsibly disclosing or reporting impartial, corroborated evidence of illegal, dangerous or unethical behavior.6
  • The requirement to explain informed consent procedures may be modified where deception is a necessary part of the research protocol (although this itself must be explained in full7 ).
  • Maintaining participants' privacy is not required where it is demonstrated that this was clearly explained and freely agreed to by the participants during recruitment and consent.

Invalid Criticisms

  • "Study was not approved by an ethical review board" is not itself grounds for rejection unless there is a substantive ethical concern that such a board should have prevented.
  • "No consent form was used" is not a valid criticism where consent was given orally or implied (e.g., by completing a questionnaire that is explicitly part of a research project).

Note

Rarely, ethical research may require unlawful action. Ethical frameworks like Menlo include legal compliance so that the ethicality and legality of research can be weighed together. Therefore, the presence of a legally dubious action is not grounds for rejection if and only if the action is ethically justified, including the risks to the researcher.

Suggested Readings

American Anthropological Association. 2020. AAA Statement on Ethics. Retrieved November 6, 2020 from https://www.americananthro.org/LearnAndTeach/Content.aspx?ItemNumber=22869.

Association for Computing Machinery. 2018. ACM Code of Ethics and Professional Conduct. Retrieved November 17, 2020 from https://www.acm.org/code-of-ethics

Sally Dench, Ron Iphofen and Ursula Huws. 2004. RESPECT: An EU Code of Ethics for Socio-Economic Research. The Institute for Employment Studies, Brighton, UK. Retrieved November 6, 2020 from: http://www.respectproject.org/ethics/412ethics.pdf

David Dittrich and Erin Kenneally. 2012. The Menlo Report: Ethical Principles Guiding Information and Communication Technology Research. Department of Homeland Security: Science and Technology. Retrieved November 6, 2020 from https://www.dhs.gov/sites/default/files/publications/CSD-MenloPrinciplesCORE-20120803_1.pdf

The British Psychological Society. 2014. _Code of Human Research Ethics. The British Psychological Society, Leicester, UK. Retrieved November 6, 2020 from https://www.bps.org.uk/sites/www.bps.org.uk/files/Policy/Policy%20-%20Files/BPS%20Code%20of%20Human%20Research%20Ethics.pdf


1 If a gatekeeper was involved in recruitment, also explains how the gatekeeper was recruited, informed, and consented, and how power relationships between gatekeeper and individual participant were mitigated to ensure free individual informed consent.
2 e.g., use of anonymization or pseudonymization during data analysis and reporting, careful consideration of the reidentification potential through others combining multiple data sources (such as social media, or contextual information like company plus job role), clear explanation of the reidentification risks to participants prior to their consent).
3 Including, where appropriate, compliance with relevant data protection legislation (e.g. EU General Data Protection Regulation (GDPR), California Consumer Privacy Act (CCPA) in terms of matters such as the lawful basis for data processing, privacy notices offered, and data subject rights).
4 Exclusion from participation should follow from the purposes of the research. For example, when investigating of the experiences of gay software developers need not include interviewing straight software developers. However, the same investigation should not exclude wheelchair users by selecting an inaccessible site for the interviews. Participants should not be excluded accidentally.
5 e.g. AAA Statement of Ethics; ACM code of ethics, BPS, BERA, RESPECT, Menlo Report (see Suggested Readings)
6 Where this information is obtained from individuals who may be identified within an organisation, explains how consideration was given to their protection, alongside any undertakings given to the organisation about this kind of disclosure.
7 For example, where possible, participants must be informed that they are taking part in a study, and the study that is described to them should have similar risks and compensation as the one they actually participate in. Participants must: (1) be debriefed in terms of the data captured and the reasons for deception, and (2) be offered the opportunity to withdraw themselves and their data at that point. Support must be provided where appropriate to mitigate potential for embarrassment or psychological harm.