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Opinion

By By Lillian Tom-Orme, Ph.D., M.P.H., R.N., F.A.A.N.
Assistant professor of family and preventive medicine, U of U School of Medicine
Member, Indian Health Service Institutional Review Board and Native Research Network

What are the ethical concerns that must be addressed when conducting medical research with people of different cultures?

In the age of cultural diversity and cultural competency in health care, education, and research, ethnic and minority populations increasingly are approached to participate in clinical trials and other research projects. The National Institutes of Health and other federal agencies require that researchers include minorities, women, and children in studies. Ethnic and minority populations request that researchers follow not only Institutional Review Board (IRB) requirements, but also local customs and procedures.

First, as investigators, all of us need to be aware of the historical context of research in communities you are attempting to contact. For instance, in African-American communities, how would you avoid making mistakes similar to those made in the Tuskegee study? American Indian/Alaska Native (AI/AN) communities and Latino/Hispanic communities have had similar negative experiences. You must learn about these, explore the history of the researcher-subject relationship, and identify ways to make the study have the most positive impact. Full disclosure and fully informed participants are part of this process. Do not assume participants have nothing better to do than participate in your research. They expect to be reimbursed for their time, and to be compensated for childcare and/or transportation costs.

Second, work at building trust between you and the community where the research will take place. Avoid thinking in terms of "subjects" or "researched community." This immediately puts you in a powerful position, and it establishes an unequal relationship. You want to be trusted. Trust-building requires being visible in the community, meeting with decision-makers, and being patient and persistent in working with the community to ensure that the research benefits both parties. Trust-building also takes time. Build at least three months into your timeline to gain acceptance. There is much to learn about communication patterns, infrastructure, taboos, and social and culture structure, as well as language.

Third, be prepared to respond to one of the first questions you will be asked: "How will this study bene't our community?" For instance, how and by how much will diabetes or cancer rates be reduced in the community? Will community members be trained in research skills? Will the findings of the study be shared with the community, study participants, and health-care providers? Among AI/AN communities, you will be informed that any data collected and reports made become property of the tribe or community.

Fourth, remember that in some cultures certain types of research are taboo. AI/AN people will always question genetic research, the use and storage of genetic samples, or even the use of tribal enrollment. Many tribes believe that only those with evil intent perform the collection of human blood or other samples. Many AI/AN also believe in burying all body parts together; they would not favor sample storage for later research.

Ideally, research would use the community-based and community-participatory approach in which the community initiates the research process, requests technical assistance from investigators, and negotiates on the study design and resources. Although this cannot always be done, you can still share the goal of this approach--to ultimately translate the findings into a comprehensive program that improves the health of the local community--by enlisting the support and involvement of the community from the very beginning of the research process.

We always welcome your comments about the magazine. Address letters to: Editor, Health Sciences Report, Office of Public Affairs, University of Utah Health Sciences Center, 50 North Medical Drive, Salt Lake City, UT 84132. FAX: (801) 585-5188. E-mail: Susan.Sample@hsc.utah.edu.

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