Community review of research into human genetic variation raises a number of questions: 1) How can models developed in Native American populations be adapted to other socially identifiable populations? 2) Can communities that lack inclusive public authorities reach a consensus about a study? 3) Can community review be carried out successfully in dispersed populations? 4) Can such a process evaluate the implications for multiple, nested levels of social identity? 5) How can community-initiated research questions, design modifications, and concerns about study implications reasonably be incorporated into researcher-initiated studies? We have established a working relationship with three diverse African American populations in Oklahoma: 1) rural all-Black towns that were initially established in the 1890s; 2) rural populations of Freedmen who were initially brought to Oklahoma in the 1830s by slave-owning members of the Five Civilized Tribes; and 3) the urban African American population of Oklahoma City, which is comprised of complex, heterogeneous, and overlapping local social networks and communities. A collaborative study of variation in haplotypes associated with prostate cancer will be proposed in each of these populations. A process of community review will be undertaken in each local community as well as in higher-order, nested communities to identify appropriate social units and networks to engage in discussions about research questions and design human subjects issues and protections. Community members will assist in developing culturally appropriate informed consent protocols. The combined ethnographic and genetic study will provide a crucial context for understanding the population-specific implications of research on human genetic variation. This is a qualitative, ethnographic project that is designed to generate a number of empirical examples of community review in action. Those diverse examples will illuminate problems in the community review process and give us opportunities to devise solutions for them. We anticipate that different levels of community review will be applicable to different kinds of local and nested communities.

Agency
National Institute of Health (NIH)
Institute
National Institute of Environmental Health Sciences (NIEHS)
Type
Research Project (R01)
Project #
3R01ES011174-02S1
Application #
6660612
Study Section
Special Emphasis Panel (ZHG1 (O1))
Program Officer
Srinivasan, Shobha
Project Start
2001-06-15
Project End
2006-04-30
Budget Start
2002-05-01
Budget End
2003-04-30
Support Year
2
Fiscal Year
2002
Total Cost
$17,640
Indirect Cost
Name
University of Oklahoma Norman
Department
Social Sciences
Type
Schools of Arts and Sciences
DUNS #
848348348
City
Norman
State
OK
Country
United States
Zip Code
73019
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Foster, Morris W (2006) Analyzing the use of race and ethnicity in biomedical research from a local community perspective. J Law Med Ethics 34:508-12, 479
Foster, Morris W; Sharp, Richard R (2006) Ethical issues in medical-sequencing research: implications of genotype-phenotype studies for individuals and populations. Hum Mol Genet 15 Spec No 1:R45-9
Foster, Morris W; Sharp, Richard R (2005) Will investments in large-scale prospective cohorts and biobanks limit our ability to discover weaker, less common genetic and environmental contributors to complex diseases? Environ Health Perspect 113:119-22
Foster, M W; Sharp, R R (2005) Will investments in biobanks, prospective cohorts, and markers of common patterns of variation benefit other populations for drug response and disease susceptibility gene discovery? Pharmacogenomics J 5:75-80
Wang, Ning; Zhou, Xiaodong; Tan, Filemon K et al. (2004) Genetic signatures of pre-expansion bottleneck in the Choctaw population of Oklahoma. Am J Phys Anthropol 124:373-9
Foster, Morris W; Aston, Christopher E (2003) A practice approach for identifying previously unsuspected environmental contributors to systemic lupus erythematosus and other complex diseases. Environ Health Perspect 111:593-7
Foster, Morris W; Sharp, Richard R (2002) Race, ethnicity, and genomics: social classifications as proxies of biological heterogeneity. Genome Res 12:844-50