Haplotype Mapping and US Chinese Community Engagements

描述（由申请人提供）：历史上，一些社会认同的群体对基因研究持相当不信任的态度。出于这个原因，为了更好地理解基于社区的伦理、法律和社会问题（ELSI）与新兴遗传知识的突出性，需要在进行人类遗传研究的同时系统地让社区参与进来。社区参与过程还旨在通过识别和最大限度地减少群体感知到的可能对参与基因研究构成严重或持续障碍的风险，从而提供免受潜在危害的保护保证。单倍型地图项目（Hap Map）在遗传学和社会关系方面提出了特殊的挑战，因为个人和社区之间的联系可能会被识别出来，而这些联系可能会或可能不会共享相同的社会身份。在这种情况下，社区参与不一定是为了达成单一的共识，而是为了确定对这些问题更现实和不同的社区观点。如果对Hap Map项目存在不同的看法，在缺乏共识的情况下，社区参与将提供关于集体风险和利益的重要信息，从而丰富政策、研究和实践。因此，该项目的三个具体目标是：(1)吸引居住在科罗拉多州丹佛市的美国华人后裔社区的广泛社区成员，他们将被邀请参与Hap Map项目和社区对遗传变异和单倍型研究的反应；(2)通过社区参与，使研究人员能够在同意过程、样本收集和/或遗传变异研究的其他方面使用符合文化的方法；(3)确定社区内文化差异如何影响与遗传变异研究相关的个人和集体风险/利益的看法。与Foster等人描述的社区话语和评论模型不同。（1997），这个提议的社区参与已经被修改为一个更加异质和地理上分散的华人后裔社区。采用6-10-5有目的的雪球抽样设计，收集的信息将：(1)检查社区对遗传变异和单倍型研究的看法；(2)制定和(3)评估对同意过程、样本收集和/或遗传变异研究的其他方面的文化响应性干预措施；(4)确定社区内文化差异如何影响对遗传变异研究和DNA样本捐赠前后Hap图相关的个人和集体风险/利益的理解。通过使用社区参与方法（例如，工作小组和焦点小组、城镇会议、个人和团体访谈），大量不同的、自我认同的华裔个人将提供潜在的不同的、可能更现实的个人和社区观点，这些观点将被识别和记录，并具有更高的有效性和可靠性。将招募60（60）名研究参与者（男女平均分布）捐献DNA样本。由于社区参与的本质是连续性和可持续性，因此Hap地图将为自然科学家和社会科学家提供一种协作手段，以了解在持续和变化的基因组学时代，种族、健康和疾病的概念如何影响个人和社会定义的社区。

DESCRIPTION (provided by applicant): 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 aI. (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 intra-community cultural variation influences 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 a 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 engagement 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.