Briefing Paper on Informed Consent

Briefing Paper on Informed Consent

AAA Committee on Ethics
Prepared by Lauren Clark and Ann Kingsolver

Preface:  In November 2000 the Committee on Ethics was asked to address the question, What constitutes valid and informed consent in anthropological research?  Members on the Committee on Ethics have prepared this briefing paper in response.

Official Sources of Guidelines: The Committee on Ethics recognizes that scientific investigations are regulated through a process of internal review for the protection of human subjects (or, collaborators).  In particular, the U. S. Department of Health and Human Services operates the Office for Human Research Protection, charged with monitoring compliance of research supported by HHS to standards outlined for the protection of human subjects (http://www.hhs.gov/ohrp/). Universities and affiliated institutions also establish and monitor protection of human subjects in research through a program of internal review.  Finally, investigators are held to codes of ethical conduct adopted by professional and scientific organizations. One of these is the American Anthropological Association Code of  Ethics. International documents which should be consulted include the 1995 Annex to the UN Declaration on Discrimination Against Indigenous Peoples, Principle 9 (http://www.cwis.org/fwdp/International/heritage.txt) and the 1994 International Covenant on the Rights of Indigenous Nations (http://www.cwis.org/icrin-94.html). The Committee on Ethics recommends that anthropologists and anthropology students conducting research with human subjects become familiar with all applicable guidelines and codes of ethical conduct and adhere to them in obtaining informed consent for these collaborators' participation in research.

Background Information on Informed Consent: The AAA Code of Ethics states the following about informed consent: "Anthropological researchers should obtain in advance the informed consent of persons being studied, providing information, owning or controlling access to material being studied, or otherwise identified as having interests which might be impacted by the research. It is understood that the degree and breadth of informed consent required will depend on the nature of the project and may be affected by requirements of other codes, laws, and ethics of the country or community in which the research is pursued. Further, it is understood that the informed consent process is dynamic and continuous; the process should be initiated in the project design and continue through implementation by way of dialogue and negotiation with those studied. Researchers are responsible for identifying and complying with the various informed consent codes, laws and regulations affecting their projects. Informed consent, for the purposes of this code, does not necessarily imply or require a particular written or signed form. It is the quality of the consent, not the format, that is relevant."

What Constitutes Valid and Informed Consent in Anthropological Research?  The following characteristics are indicative of valid and informed consent.  Researchers seeking valid and informed consent will

• Engage in an ongoing and dynamic discussion with collaborators (or human subjects, in the language of some codes) about the nature of study participation, its risks and potential benefits; this means actively soliciting advice from research participants at all stages, including planning and documentation.
• Engage in a dialogue with human subjects who have previously or continuously been involved in a particular study about the nature of ongoing participation or resuming participation in a study.  This dialogue should include the nature of their participation, risks and potential benefits at this particular time.
• Discuss with potential research subjects the ways study participation may affect them when research data are disseminated.  For example, if photographs documenting their participation in a particular event or situation at a certain time could prove incriminating if viewed by a wide audience, this eventuality should be discussed.
• Demonstrate, in the appropriate language, all research equipment and documentation techniques prior to obtaining consent so that research collaborators, or participants, may be said to be adequately informed about the research process.
• Inform potential subjects of the anonymity, confidentiality, and security measures taken for all types of study data, including digitized, visual, and material data.
• Seek to answer all questions and concerns about study participation that potential subjects may have about their involvement in the research process.
• Provide a long-term mechanism for study subjects to contact the researcher or the researcher's institution to express concerns at a later date and/or to withdraw their data from the research process.
• Provide, if possible, alternative contact information in case a potential research subject or collaborator does not want to participate but does not feel able to communicate that directly to the researcher.
• Obtain official consent from the human subject to participate in the study prior to the collection of any data to be included in the research process.  The form and format of official consent can vary, depending on the appropriateness of written, audiotaped, or videotaped consent to the research situation. Those granting the permission should be involved actively in determining the appropriate form of documenting consent.
• Write and submit forms pertaining to informed consent, and obtain approval by the appropriate committees and/or review boards prior to recruiting subjects, obtaining informed consent, or collecting data.