Ethics Task Force – Draft Principle: Informed Consent

9 thoughts on “Ethics Task Force – Draft Principle: Informed Consent”

  1. I like the addition that informed consent does not need to via a written form. I find such a form very off-putting and worrying for many local peoples outside of the European cultural milieu–they worry about what they are signing and moreover they often worry about remaining anonymous. Hopefully adding this part will help influence IRBs to realize tat written consent forms are often not the best way to obtain consent in many fieldwork contexts.

  2. ‘Informed consent inn the Draft ‘appropriately retains the strength of the wording in the present code (1998). Here the use of “anticipated impacts” is more realistic than the wording in Principle 3 where the anthropologist assumes responsibility for ‘all likely or foreseeable uses of subjects’ datasets.’

  3. Informed consent, as this principle emphasizes, is indeed an essential part of anthropological research. It may also beneficial to add some language to this principle about obtaining the consent of less central individuals who can get grouped in with consenting individuals, as is often the case in fieldwork situations. For instance, while certain consultants may understand and consent to research, others who may get drawn in inadvertently, such as young people, those in less powerful social positions, and others who may occupy a more marginal social role but are nonetheless included in ethnographic research, should also be asked about their participation. To the extent possible, minors or social marginal individuals who are not the main focus of the study but may ultimately be included should also be approached and notified about issues of consent.

  4. That informed consent is a process should be upfront in the beginning of an anthropological ethics statement. This is the opposite of the usual IRB expectation, where everything to be done is spelled out in advance and premises a literate Western subject. The essence of anthropological research is that the researcher hopes to learn from the “subjects,” i.e., hosts. An ethics principle for anthropology should state this, and that learning from and working with the site hosts is a process that cannot be foretold.

  5. Here are some ideas for tweaking the draft informed consent principle. The most important change I have made is to replace anonymity with confidentiality. IRBs consider anonymous data to be from studies in which even the researcher does not know who said or did what (e.g., anonymous online survey). In anthropological research, we are more typically talking about confidentiality, that is, the researcher knows who said or did what, but they are keeping the participants’ identities confidential.

    Informed consent is a dynamic, continuous and reflexive process

    Anthropological researchers working with living human communities should obtain in advance the informed consent of persons being studied, providing information, and/or granting access to material being studied. The degree and breadth of informed consent may be influenced by the nature of the project and its setting. Minimally, informed consent would include sharing with potential participants, in an understandable form, the research goals, study methods, funding sources or sponsors, and expected outcomes and impacts of the research.

    Informed consent does not necessarily imply or require a written lay summary or a written and signed consent form. It is the quality of the consent, and not its format, that is relevant. In many cases, verbal explanation of the project and verbal consent to participate is more appropriate than written or oral forms. Consent must be freely given, and anthropologists must be sensitive to circumstances in which consent may not be truly voluntary or informed. In the event that the research changes in ways that will directly affect the participants, updated information about participation should be provided and consent renegotiated. The informed consent process is necessarily dynamic and continuous; the process should be initiated as part of project design and continue through implementation as an ongoing dialogue and negotiation with those studied.

    Researchers should also establish with participants whether they wish their identity to be kept confidential or not. Researchers must present to research participants the possible impacts of participation, and make clear that despite their best efforts, confidentiality may be compromised or outcomes may differ from those anticipated. If participants wish to their real name to be used, the researcher should make sure that participants understand and are comfortable with the associated risks. If the participants wish their real name to be used and the researcher is not comfortable with the risks, the researcher must inform the participants and ask if they still wish to participate in the research even if their identity is kept confidential in the researcher’s publications.

  6. I have served on two IRBs and indeed both would want us to explain risks and benefits. In principal I agree with this. However, I think it is important to note explicitly that IRB protocols in the US and elsewhere developed largely with regard to experimental sciences. This is important because by definition an experiment involves a much greater degree of control than participant-observation fieldwork. And this is important because those who design experiments, and thus exercise or aim to exercise control, are also in a privileged position to anticipate risks and benefits. Many of us are not. I think we need some kind of standard that we consider and communicate costs and benefits as much as possible, but we also need to acknowledge that established ethnographic methods can limit our ability to do this. In my experience IRBs are responsive to learning this, and understand that sometimes the most they can do is hold a research proposal accountable to the researchers’ own professional standards. So a code of ethics that makes this explicit will help not only graduate students and other PIs, but also members of IRBs who are trained in the experimental sciences.

  7. I agree with the comment on the need for acknowledging the idea of risks and benefits. Additionally, I would suggest that the principle also acknowledge the fact that informed consent is a “process” not a form. The principle is to provide people with sufficient information to allow them to make an informed decision about participation in a project. That principle can be achieved verbally, graphically, in writing, using video, etc. etc. etc. This addition to the principle would be very beneficial in negotiating different processes for informed consent with IRBs, for anthropologists who are working with people for whom signing a written consent form is not the best way of accomplishing the goal/principle in various cross cultural settings.

  8. A member sent the following e-mail to the task force, and we wanted to share it with the membership:

    “The IRB would probably say that informed consent should also address the risks and benefits of participating in research. Perhaps this is what is meant by the phrase ‘possible impacts of participation’ although that phrase is somewhat ambiguous. Explicitly referring to risks and benefits would improve this principle.”

    task force

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