Trust and Genetics Research in Diverse US Communities

描述(由申请人提供)：这项提案寻求建立在四年资助工作的基础上，在美洲印第安人和阿拉斯加原住民(AI/AN)社区进行基因研究的伦理、法律和社会影响(ELSI)。在这项工作的过程中，信任问题以独特的突出表现出来，因为美国印第安人和阿拉斯加原住民社区成员对研究人员的虐待表示担忧，他们认为研究人员主要对自我进步感兴趣，而且他们认为，这些人几乎没有给这些遭受严重健康差距之苦的社区带来多少价值。在对糖尿病和酒精依赖等复杂疾病进行遗传研究的背景下，这些担忧被特别敏锐地提出--事实证明，这些问题的遗传因素比最初希望的要难得多，环境和行为干预继续显示出最好的前景。当我们调查了现有的针对其他人群的ELSI文献时，我们震惊于我们在AI/AN社区听到的许多担忧在其他地方提出的程度。在这里，我们关注癌症遗传学，而不是更容易受到批评的糖尿病和酒精依赖方面的工作，因为个性化药物的前景可能首先在这一领域实现。因此，癌症遗传学为我们探索遗传知识在生物医学研究和卫生保健中的可能益处和风险提供了可以说是更强有力的基础。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、研究和保健的态度； 2.在这些讨论的基础上，阐明对这些社区的研究的信任和不信任的来源；以及 3.与社区成员和组织合作，确定可解决不信任根源的政策和程序，并加强对未来可能进行的基因研究和保健的信任。

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.