By Elana Brief, Judy Illes

Community partnerships help guide the return of results from genetic research with indigenous peoples.

When designing genetic studies with human subjects, researchers address the question of whether and how to return results to participants, and also face the challenge of how to handle incidental findings-results that were not part of the aims of the study but may be important to the participant. Much of the discussion about return of results and incidental findings has focused on ethical implications for individual research participants. The general consensus is that results should be returned (or not returned) based on an informed consent process that has given a participant the right to choose.

These matters become more complicated, however, when the individual participant is part of a group that has consented to the research as a community. Special considerations must be made when the group is a geographically or culturally distinct community, such as an indigenous population. When returning research results-and particularly incidental findings-to someone within one of these communities, a researcher must consider not only the implications for the individual, but for other community members and community agencies as well.

Key questions in these situations are:

Upholding confidentiality. How can researchers uphold individual confidentiality in a rural or remote community in which "everyone knows" who is interacting with whom?

Rights of other community members. How can researchers balance an individual's privacy with the rights of others in the community who may be affected by the results (e.g., if a genetic mutation is found incidentally in some members of a community, then the entire community might be labeled as carrying that mutation)?

Rights of community agencies. If community organizations and other agencies will be affected by results obtained for an individual (e.g., genetic prediction of a disease for which treatment planning may be necessary) do they have a right to know the results?

Indigenous communities often draw the interest of researchers because of the likelihood of increased genetic homogeneity within the community as well as the potential for unique genetic findings. Researchers have a long history of unethical practices with indigenous communities, however, including inaccurate dissemination of primary results that have led to stigma, not reporting study results back to community members, and improper handling of biological tissues. In 2006, The United Nations Declaration on the Rights of Indigenous Peoples outlined the rights of indigenous peoples to their artifacts and knowledge:

"Indigenous peoples have the right to maintain, control, protect and develop their cultural heritage, traditional knowledge, and traditional cultural expressions, as well as the manifestations of their sciences, technologies, and cultures, including human and genetic resources."

In Canada, the First Nations Principles of OCAP (Ownership, Control, Access, and Possession) guide researchers regarding the handling of data and results in studies involving aboriginal peoples. We have outlined below how these principles may apply to genetic research.

Ownership: When biological samples have been collected from members of an indigenous community and stored in a research biobank, the community owns those materials.

Control: The indigenous community controls primary and secondary research and dissemination. (If they disapprove of the research being conducted or do not want it to be disseminated, they can put a stop to it.)

Access: The indigenous community has access to the results of any research conducted using those samples.

Possession: OCAP also suggests that the indigenous community must possess the materials. This may be straightforward in the context of social science data, but is far more complicated for biological tissues. Few communities have the capacity to bank DNA samples.

Nonetheless, OCAP guidelines offer an opportunity to researchers to ensure that they are conducting studies that are respectful, mutually beneficial, relevant and responsible. OCAP makes it clear that the community owns and controls the data, and that community representatives must be part of the research team that develops and implements a study.

While the OCAP principles and the UN Declaration on the Rights of Indigenous Peoples provide fundamental guidance to agreements between researchers and indigenous communities, other questions remain: Who consents for a community: the research participants themselves or also non-participants affected by the research; the elected chief and council, or the hereditary chief? The answers to this question directly relate to how to handle and return results: To whom should results be returned: only to a participant; amalgamated to the whole community?

These questions and more are best answered through partnership; partnership between researchers and communities. Community collaboration facilitates the ability of the research team to conduct relevant research for the community, to re-contact study participants in order to return results, to prepare individuals and the community before results are returned, and to support them after receiving their results. Community partnerships can also help guide the dissemination of findings.

We believe that all researchers, those involved in genetics research and others, have a responsibility to understand the specific perspective and desire of the community about unexpected findings. We believe the best approach is for researchers to develop and implement a management plan for unexpected findings in collaboration with community representatives. The management plan itself will require some research, but all research agreements should include management plans for incidental findings and return of individual research results.

There is no pan-Indigenous ethical framework to guide researchers on handling return of results and incidental findings, and there is an almost complete absence of relevant literature. In order to meet their responsibility to design a community-engaged management plan for unexpected results, researchers' work must begin long before any data samples are acquired.             


Elana Brief, PhD, is a Research Fellow at the National Core for Neuroethics at the University of British Columbia (UBC). She received her doctorate in physics from UBC.  At the Core, Dr. Brief leads a project investigating Aboriginal views on brain health, aging and dementia.

Judy Illes, PhD, FCAHS, is Professor of Neurology, Canada Research Chair in Neuroethics, and. Director of the National Core for Neuroethics at UBC. Dr. Illes' research focuses on ethical, legal, social and policy challenges specifically at the intersection of the neurosciences and biomedical ethics.


Further reading:

Brief E, Mackie J, Illes J. Incidental Findings in Genetic Research: A Vexing Challenge for Community Consent. Minnesota Journal of Law, Science & Technology. 2012; 13(2):541-558.

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