Research on human genetic variation can present collective risks to all members of a socially identifiable group. Research that associates race or ethnicity with a genetic disposition to disease, for example, presents risks of group discrimination and stigmatization. To better protect against these risks, some have proposed supplemental community-based reviews of research on genetic differences between populations. The assumption behind these appeals is that involving members of study populations in the review process can help to identify and minimize collective risks (...) that otherwise could go unnoticed. In contrast to this position, critics have argued that supplemental community-based reviews are unnecessary, impractical, and morally problematic. This paper is our attempt to advance this debate by distinguishing the various goals of community review and the forms that it can take. (shrink)

Research on human genetic variation can present collective risks to all members of a socially identifiable group. Research that associates race or ethnicity with a genetic disposition to disease, for example, presents risks of group discrimination and stigmatization. To better protect against these risks, some have proposed supplemental community-based reviews of research on genetic differences between populations. The assumption behind these appeals is that involving members of study populations in the review process can help to identify and minimize collective risks (...) that otherwise could go unnoticed. In contrast to this position, critics have argued that supplemental community-based reviews are unnecessary, impractical, and morally problematic. This paper is our attempt to advance this debate by distinguishing the various goals of community review and the forms that it can take. (shrink)

Strategies for protecting historically disadvantaged groups have been extensively debated in the context of genetic variation research, making this a useful starting point in examining the protection of social groups from harm resulting from biomedical research. We analyze research practices developed in response to concerns about the involvement of indigenous communities in studies of genetic variation and consider their potential application in other contexts. We highlight several conceptual ambiguities and practical challenges associated with the protection of group interests and argue (...) that protectionist strategies developed in the context of genetic research will not be easily adapted to other types of research in which social groups are placed at risk. We suggest that it is this set of conceptual and practical issues that philosophers, ethicists, and others should focus on in their efforts to protect identifiable social groups from harm resulting from biomedical research. (shrink)

Most discussions of the use of race and ethnicity in biomedical research and clinical care focus on broad national and transnational populations. Looking at the problem from the perspective of large populations, however, misses the rest of a continuum that runs from the global human population to local communities. If race and ethnicity are fundamental categories for biomedical analyses, they should be informative at all points along that continuum, much as the definition of a gene remains unchanged whether analyzed in (...) the context of an individual, a group, or the total human population. By examining the utility of racial and ethnic categories at a local community level, we can better evaluate whether those categories are indeed fundamental units for analysis. Alternatively, these categories may be analytic proxies useful primarily for approximating aggregate biological and social features of large populations at national and transnational levels of analysis. (shrink)

Lost in the debate over the use of racial and ethnic categories in biomedical research is community-level analysis of how these categories function and influence health. Such analysis offers a powerful critique of national and transnational categories usually used in biomedical research such as “African-American” and “Native American.” Ethnographic research on local African-American and Native American communities in Oklahoma shows the importance of community-level analysis. Local health practices tend to be shared by members of an everyday interactional community without regard (...) to racial or ethnic identity. Externally created practices tend to be based on the existence of externally-imposed racial or ethnic identities, but African-American and Native American community members show similar patterns in their use of extra-community practices. Thus, membership in an interactional community seems more important than externallyimposed racial or ethnic identity in determining local health practices, while class may be as or more important in accounting for extra-community practices. (shrink)