Ethical issues in protecting research participants

Some specific ethical concents in doing research are reduced in those participatory research projects, when participants are collaboratively engaged in those projects, are also well-infonned of any risks to them, and are likely to benefit from the action research. Still, any action research endeavor, even with a strong participatory component, has uncertain outcomes, risks, and benefits to the people involved. So, many ethical considerations remain. Discussed below are some essential safeguards that those doing action research must be responsible to maintain. Further, when the action research is pursued in the context of a school, community organization, or public agency, there are Federal mandates for having oversite provided by an Institutional Research Board (IRB). A discussion of the details involved in the creation and operation of an IRB are beyond the scope of this book, so the reader is advised to review some relevant sources. These Federal requirements and standards are based on three important principles: 1) Respect for individuals—this means, for example, minimizing any hann to participants or others, especially those with whom one interacts or about whom private information is obtained, and quite important with regards to vulnerable groups such as children, people who are marginalized, and those who are at risk emotionally. 2) Beneficence—where the benefits of participating in research outweigh the risks to participants; and 3) Equity and Justice—where no single group or groups are likely to benefit at the expense of another group or groups.

Key areas of needed safeguards are, with regards to respect

• 1. Privacy and confidentiality.
• 2. This can be particularly challenging in small social groups where it can easily be determined who said what. In writing and communicating their research methods and results, care should be taken to assure the anonymity and confidentiality of participants, unless participants explicitly give the researcher(s) permission to disclose their identity. This means, as well, that in writing up case studies or detailed examples of participant comments, the researcher(s) may sometimes have to change a few details about the case write-up or the person’s comments, to prevent others from identifying them.
• 3. Disclosure vs. deception.
• 4. Concerns over the ethical obligation to disclose what one is doing sometimes conflict with the fact that people’s behavior may change if they know they are being studied. This has been particularly problematic when studying less powerful groups. Researchers must be completely transparent with participants about the purpose (s) of their study, and that there not be any undisclosed “manipulations” of research participants.
• 5. Informed consent.
• 6. Research participants should understand what will be expected of them if they are to participate in the research. They should read, and be assisted in understanding, an informed consent form that is free from jargon and obscure technical language. They should be assured that their participation is completely voluntary with no negative repercussions should they decide not to continue. It is also important that they are explicitly informed that if, at any point in their participation (including for example, during an interview) they feel uncomfortable, or otherwise decide they wish to no longer participate, they always have the option of immediately ending their participation. In addition, for example, with survivors of trauma or others who may be psychologically vulnerable, participants should be informed that if they feel that their participation has raised difficult emotional issues for them, and feel they may then need psychological support or counseling assistance, then they should inform the researcher who will then give them one or more referrals for support and/ or assistance.

Key considerations with regards to beneficence

1. Likely benefits to participants should outweigh the risks. Ethical research has a strong likelihood of having greater benefits to participants and fewer significant risks. Even when participants are well-informed and provide consent, there should be some likely, worthwhile benefits to the participants. Possible benefits include 1) becoming better informed, either through the interview process itself, and/or later receiving a copy of the main insights and/or results from the research; 2) having good reason to believe that the research will contribute to worthwhile societal changes or community or organizational improvements that are valued by the participants; and 3) becoming better connected with others in their community or organization as a result of the action research project, among others.

Justice and equity

This means, for example, that participants are chosen for their value to the potentially worthwhile, and openly stated, purposes of the action research project, not because they are vulnerable or can easily be manipulated into participating. One group of people should not be exploited or manipulated in a research study to provide insights that benefit other groups. In particular, people from marginalized groups should not be research participants for research that will provide the greatest benefits to more privileged groups.

Consequently, anyone who makes decisions about the aims, design or conduct of an action research project may find useful the following a partial checklist of circumstances, or steps, requiring special attention by researchers, in order to be attentive to the welfare of individuals participating in the project:

a. when vulnerable populations, such as young children, prisoners, or the cognitively impaired are involved;

b. if there is any possibility of physical harm to any individual;

c. when posing sensitive questions, including topics related to sexual activity; victimization, use of alcohol or illegal dings, or involvement in illegal activity;

d. by ensuring anonymous data collection so that the data are not linked to individuals;

e. requiring that information identifying individuals be kept separately from the information collected from those individuals; and

f. requiring destruction of non-research data at the end of the course or within a short time afterward.