Trust and Genetics Research in Diverse US Communities

描述（由申请人提供）：该提案旨在建立在美国印第安人和阿拉斯加原住民（AI/AN）社区基因研究的伦理、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，信任问题以独特的突出形式出现，因为美国印第安人和阿拉斯加土著社区成员表达了对研究人员虐待的担忧，他们认为这些研究人员主要对自我发展感兴趣，并且认为这些研究人员对这些社区的价值回报很少，这些社区遭受了如此不成比例的健康差距。在对复杂疾病（如糖尿病和酒精依赖）进行遗传研究的背景下，这些问题已被特别尖锐地提出，这些问题的遗传贡献已被证明比最初希望的更难辨别，环境和行为干预继续显示出最好的希望。当我们调查了其他人群的现有ELSI文献时，我们被我们在AI/AN社区中听到的许多担忧在其他地方提出的程度所震惊。在这里，我们将重点放在癌症遗传学上，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潜在利益和风险提供了一个可以说是更强大的基础。我们有三个具体目标：

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.