Trust and Genetics Research in Diverse US Communities

美国不同社区的信任和遗传学研究

• 批准号: 7272893
• 负责人: Tim E Byers
• 金额: $ 36.49万
• 依托单位: UNIVERSITY OF COLORADO DENVER
• 依托单位国家: 美国
• 财政年份: 2005
• 资助国家: 美国
• 起止时间: 2005-09-26 至 2010-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7272893
• 关键词: Address; Alaska Native; Alcohol dependence; Alcoholism; Alcohols; American Indians; Area; Attention; Attitude; Behavior Therapy; Benefits and Risks; Biomedical Research; Communities; Complex; Critiques; Diabetes Mellitus; Disadvantaged; Disease; Employee Strikes; Funding; Future; Genetic; Genetic Research; Goals; Health Services Research; Healthcare; Hearing; Knowledge; Literature; Medicine; Native Americans; Policies; Population; Procedures; Protocols documentation; Research; Research Personnel; Solutions; Source; Surveys; Trust; Work; base; cancer care; cancer genetics; ethical legal social implication; health disparity; interest; member

DESCRIPTION (provided by applicant): This proposal seeks to build on 4 years of funded work on the ethical, legal, and social implications (ELSI) of genetic research in American Indian and Alaska Native (AI/AN) communities. In the course of that work, questions of trust have emerged with unique salience as American Indian and Alaska Native community members have expressed concerns with abusive treatment by researchers whom they characterize as primarily interested in self advancement and who, it is argued, have returned little of value to these communities that suffer so disproportionately from health disparities. These concerns have been raised with particular acuity in the context of genetic research on complex disorders such as diabetes and alcohol dependence - problems for which genetic contributions have proven to be much more difficult to discern than originally hoped and for which environmental and behavioral interventions continue to show the best promise. As we have surveyed the extant ELSI literature for other populations, we have been struck by the degree to which many of the concerns we have heard in AI/AN communities are raised elsewhere. We focus, here, on cancer genetics instead of the more easily critiqued work in diabetes and alcohol dependence because it is in this area that the promise of personalized medicine may first be realized. Cancer genetics thus provides us with what is arguably a much stronger basis for exploring the possible benefits and risks of genetic knowledge in biomedical research and health care. We have three specific aims: 1. to explore attitudes toward genetic knowledge, research, and health care for cancer in four urban cultural communities; 2. building on these discussions, to articulate the sources of both trust and mistrust toward research in these communities; and 3. to work collaboratively with community members and organizations to identify policies and procedures that can address sources of mistrust and strengthen trust in possible future genetic research and health care.

描述（由申请人提供）：该提案旨在建立在美洲印第安人和阿拉斯加原住民 (AI/AN) 社区遗传研究的伦理、法律和社会影响 (ELSI) 的 4 年资助工作的基础上。在这项工作的过程中，信任问题变得尤为突出，因为美洲印第安人和阿拉斯加原住民社区成员对研究人员的虐待行为表示担忧，他们认为这些研究人员主要对自我进步感兴趣，而且据称这些研究人员几乎没有回报。对于这些因健康差距而遭受严重影响的社区具有价值。在对糖尿病和酒精依赖等复杂疾病进行基因研究的背景下，人们特别敏锐地提出了这些担忧——事实证明，这些问题的遗传贡献比最初希望的要难得多，而且环境和行为干预措施仍在继续。展现最好的承诺。当我们调查了其他人群的现有 ELSI 文献时，我们对在 AI/AN 社区中听到的许多担忧在其他地方提出的程度感到震惊。在这里，我们关注的是癌症遗传学，而不是更容易受到批评的糖尿病和酒精依赖方面的工作，因为正是在这个领域，个性化医疗的前景可能首先得以实现。因此，癌症遗传学为我们探索遗传知识在生物医学研究和医疗保健中可能带来的益处和风险提供了更强有力的基础。我们有三个具体目标： 1. 探讨四个城市文化社区对癌症遗传知识、研究和医疗保健的态度； 2. 在这些讨论的基础上，阐明这些社区对研究的信任和不信任的根源；和 3. 与社区成员和组织合作，确定能够解决不信任根源并加强对未来可能的基因研究和医疗保健的信任的政策和程序。