Culturally Specific Risks Of Ethnic Research

The potential risks that genetic studies pose for individual participants are commonly required in informed consent documents by funding agencies and institutional ethics review boards charged with protecting human subjects. For this reason, most experienced investigators are familiar with them. However, these risks are to be contrasted with culturally specific risks that include discrimination or stigmatization of a study population, as well as adverse associations that may be detrimental to the population. Comprehensive consideration of these matters is beyond the primary scope of this book, but they should be addressed because of their importance to the assessment of the effect of ethnogeographic factors on human drug response. The brief comments that follow rely mainly on the writings and recommendations of authors whose primary expertise concerns these issues.10,19,99,100

Various types of culturally specific risks should be distinguished. They include what have been termed ''external'' risks, that is, harms that are inflicted by individuals who are not members of the study population. Perhaps the most important of these is overt racism. Populations with unique legal and political status might also be challenged by genetic findings. Genetic information might also undermine a group's ability to assert legal claims for land or for items of cultural inheritance based on oral history or tradition. Such information can also be interpreted by members of a study population in a manner that can disrupt the established social order of their shared community. Moreover, certain targeted genetic screening programs have raised concerns that can present barriers to broad participation in beneficial tests. Because they are culturally defined, outsiders may not be able to anticipate such risks.

Another type of risk involves the potential for disruption of existing relationships within families or between social groups that may arise from recruitment of community members for any purpose as part of a study, but particularly for matters relating to health. Additionally, genetic tests that are meant to identify predisposition to disease may be viewed as interfering with or usurping traditional functions for prevention in the community. The modification of research designs may be necessary to accommodate specific concerns.

Publication of genetic findings can also disrupt existing social arrangements, especially if the study populations are powerless to contest claims made about them. To suggest, for example, that a socially homogeneous population is biologically, and hence ancestrally more heterogeneous than previously thought could affect the social standing of an entire community. In one study, genealogical research combined with linkage analysis indicated a significantly greater admixture of European heritage that was acknowledged by the study participants. Claims to Native ancestry were thereby reduced, which in turn threatened opportunities for leadership in the community.

Investigators with experience in working with indigenous communities have learned that a research study that bypasses a community's decision-making process by relying solely on individual informed consent presents a risk that may undermine moral authority within the community. Individuals who decide to participate in a study on this basis may invite problems where a process of collective decision making is customary prior to individual choice. If individuals voice their opinions before a community consensus emerges, it may call into question both the authority of that consensus and the collective decision-making process that produced it. On the other hand, decisions by outsiders or by arbi trarily selected local representatives can be equally hazardous to the performance of the study.

Researchers who engage constituents of a prospective study population in a more thorough discussion of a proposed study than is gained by a standard informed consent statement can be helpful in clarifying the goals and approaches to the study. Members of the population to be studied may help to identify and minimize risks that may not be obvious to outsiders. Unarticulated concerns and fears may come to light that can lead to controversy and undermine recruitment participants, or their willingness to embrace diagnostic and therapeutic methods developed from the study. By learning how members of diverse study populations perceive risk, investigators will improve their chances of assessing specific benefits that information on human genetic variation offers and of communicating risks that may be associated with such variation.

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