Haplotype Mapping and US Chinese Community Engagements

单倍型作图和美国华人社区参与

• 批准号: 6665077
• 负责人: MAURY A NATION
• 金额: $ 29.24万
• 依托单位: VANDERBILT UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2002
• 资助国家: 美国
• 起止时间: 2002-09-27 至 2004-08-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6665077
• 关键词: Chinese American; behavioral /social science research tag; belief; biotechnology; blood chemistry; clinical research; community health services; culture; data collection methodology /evaluation; ethics; genetic disorder diagnosis; genetic mapping; genetic polymorphism; genetic screening; genotype; health care service availability; health care service utilization; health related legal; health science research; health services research tag; human genetic material tag; human population genetics; human subject; interview; sample collection; social perception

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.

描述（由申请人提供）：一些社会可识别的群体历来认为遗传研究相当不信任。因此，为了更好地了解社区伦理、法律的和社会问题在新兴遗传知识中的重要性，有必要在开展人类遗传研究的同时，系统地让社区参与。社区参与过程还旨在通过识别和最大限度地减少可能对遗传研究参与构成严重或持续障碍的群体感知风险，提供保护保证，使其免受潜在危害。单倍型图项目（Hap Map）在遗传学和社会关系方面带来了特殊的挑战，因为个人和社区之间的联系可以为那些可能或可能不具有相同社会化身份的人确定。在此背景下，社区参与不一定是为了达成单一共识，而是为了确定社区对这些问题的更现实和更多样的观点。如果Hap Map项目存在不同的观点，在缺乏共识的情况下，社区参与将提供有关集体风险和利益的重要信息，这些信息将为政策，研究和实践提供丰富的信息。因此，该项目的三个具体目标是：（1）邀请居住在科罗拉多丹佛的美国华裔社区的广泛社区成员参与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文化上敏感的方法;以及（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/收益的看法。与Foster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，以适应更异质和地理上分散的华裔个人社区。使用6-10-5有目的的雪球抽样设计，将收集信息（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）确定社区内文化差异如何影响对与遗传变异研究和DNA样本捐赠前后Hap Map相关的个人和集体风险/收益的理解。通过使用社区参与方法（例如，工作和焦点小组、城镇会议、个人和小组访谈），大量不同的、自我认同的华裔个体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，具有更大的有效性和可靠性。将招募六十（60）名研究受试者（男女平均分布）进行DNA样本捐赠。由于社区参与的本质是连续性和可持续性，Hap地图将为自然和社会科学家提供一种协作手段，以了解种族，健康和疾病的概念如何影响个人和社会定义的社区在基因组学的持续和不断变化的时代。