Haplotype Mapping and U.S. Chinese Community Engagements (HAPMAP)

Some socially identifiable groups have historically perceived genetic research with considerable mistrust. For this reason, and to better understand the salience of community-based ethical, legal and social issues (ELSI) with emerging genetic knowledge, a need exists to systematically engage communities simultaneously with conducting human genetic research. Community engagement processes also intended to provide protection assurances from potential harms by identifying and minimizing group perceived risks that may be acute or ongoing barriers to genetic research participation. The Haplotype Map project (Hap Map) creates particular challenges regarding genetics and social affiliations because linkages between individuals and communities may be identified for those who may or may not share the same socialized identity. Within this context, community engagements are not necessarily designed to achieve a singular consensus but rather to ascertain more realistic and varied community perspectives about these issues. If different perspectives of the Hap Map project exist, in the absence of consensus, community engagements will provide important information about collective risks and benefits that will richly inform policy, research, and practices. Accordingly, three specific aims of this project are: (1) to engage a wide range of community members in a U.S. community of people of Chinese descent living in Denver, Colorado who will be asked to participate in the Hap Map project and community responses to genetic variation and haplotype research; (2) through the community engagement, to enable the researcher to use culturally responsive approaches to the consent process, sample collection and/or other aspects of genetic variation research; and (3) to identify how intra-community cultural variation influences perceptions of individual and collective risks/benefits associated with genetic variation research. Unlike the community discourse and review model described by Foster et al (1997), this proposed community engagement has been modified for a more heterogeneously and geographically dispersed community of individuals of Chinese descent. Using 6-10-5 purposeful snowball sampling design, information will be collected (1) examining community perspectives to genetic variation and haplotype research while (2) developing and (3) assessing culturally responsive interventions to the consent process, sample collection and/or other aspects of genetic variation research; and (4) identifying how Intracommunity cultural variation influence the understandings of individual and collective risks/benefits associated with genetic variation research and the Hap Map prior to and post DNA sample donation. By using an community engagement approach (e.g., working and focus groups, town meetings, and individual and group interviews) a large number of diverse, self-identified individuals of Chinese descent will provide potentially divergent and possibly more realistic individual and community perspectives that will be identified and recorded with greater validity and reliability. Sixty (60) study participants (equally distributed between men and women) will be recruited for DNA sample donation. Since the very nature of community engagements is of continuity and sustainability, the Hap Map will be providing natural and social scientists a collaborative means for understanding the implications of how the concepts of race, health, and disease affect individuals and socially defined communities in the continuing and changing age of genomics.