Haplotype Mapping and US Chinese Community Engagements

描述(由申请人提供)：一些社会可识别的群体在历史上对基因研究持相当不信任的态度。因此，为了更好地理解以社区为基础的伦理、法律和社会问题(ELSI)对新出现的遗传知识的重要性，有必要在进行人类基因研究的同时系统地让社区参与进来。社区参与进程还旨在通过确定和最大限度地减少群体感知的风险来提供免受潜在危害的保护保证，这些风险可能是基因研究参与的严重或持续障碍。单倍型图谱项目(Hap图谱)在遗传学和社会联系方面带来了特殊的挑战，因为可以为那些可能拥有或可能不拥有相同社会化身份的人确定个人和社区之间的联系。在这种情况下，社区参与不一定是为了达成单一的共识，而是为了确定社区对这些问题更现实和更多样化的观点。如果Hap Map项目存在不同的视角，在缺乏共识的情况下，社区参与将提供有关集体风险和收益的重要信息，这些信息将为政策、研究和实践提供丰富的信息。因此，这个项目的三个具体目标是：(1)让居住在科罗拉多州丹佛市的美国华裔社区中的广泛社区成员参与Hap Map项目，以及社区对遗传变异和单倍型研究的反应；(2)通过社区参与，使研究人员能够使用文化响应方法来进行同意过程、样本收集和/或遗传变异研究的其他方面；以及(3)确定社区内文化差异如何影响对个人和集体与遗传变异研究相关的风险/利益的看法。与福斯特等人描述的社区话语和评论模式不同。(1997)，这一拟议的社区参与已被修改，以建立一个更加异质和地理分散的华裔个人社区。利用6-10-5有目的的滚雪球抽样设计，将收集以下信息：(1)检查社区对遗传变异和单倍型研究的观点，同时(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干预措施；以及(4)确定社区内文化变异如何影响对遗传变异研究的个人和集体风险/利益的理解，以及DNA样本捐赠前后的Hap图谱。通过使用社区参与方法(例如，工作和焦点小组、城镇会议和个人和小组访谈)，大量不同的、自我认同的华裔个人将提供潜在的不同和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(平均分配给男性和女性)捐赠DNA样本。由于社区参与的本质是连续性和可持续性的，Hap Map将为自然和社会科学家提供一种协作手段，以了解在基因组学持续和变化的时代，种族、健康和疾病的概念如何影响个人和社会定义的社区的含义。

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.