Pilot HGDP: Croos-Cultural Issues in Genetic Research with Plains Apaches: A Pilot Study for the Human Genome Diversity Project

这个项目关注的是美国印第安人社区的遗传学研究的伦理和法律问题。首先，涉及俄克拉何马州阿帕奇部落的此类研究的条件将与部落政府谈判。谈判将解决以下问题：隐私、团体污名、调查结果的公布、财产权和样本处理。将研究个别部落成员对遗传学研究的反应。其次，研究将解决糖尿病的易感性和癌症的抵抗力。最先在皮马印第安人身上发现的一种突变可能会影响肾上腺素的功能，从而增加患糖尿病的风险。此外，男性荷尔蒙系统中的一种基因变异可能会提供前列腺癌的保护。这些因素对这些人口健康的作用将根据与部落谈判的指导方针进行测试。糖尿病和癌症等疾病的预防需要改进。相关发现可以通过研究为什么不同人群的健康模式不同而产生。为了实现人类多样性基因组计划的这一目标，从不同的文化角度满足对研究的伦理关切至关重要。这项初步研究将探索遗传学研究人员和土著社区如何合作。

This project focuses on ethical and legal issues for genetics research in an American Indian community. First, conditions for such research involving the Apache Tribe of Oklahoma will be negotiated with the tribal government. Negotiations will address the following issues: privacy, group stigmatization, publication of findings, property rights, and the disposition of samples. The response of individual tribal members to genetics research will be studied. Second, research will address susceptibility to diabetes and resistance to cancer. A mutation first found in Pima Indians may affect the function of adrenaline, contributing risk for diabetes. In addition, a genetic variant in the male hormone system may offer protection from prostate cancer. The role of these factors in the health of this population will be tested, following guidelines negotiated with the tribe. Prevention of diseases such as diabetes and cancer needs improvement. Relevant discoveries can arise from studying why health patterns vary in different populations. To achieve this goal of the Human Diversity Genome Project, it is crucial to satisfy ethical concerns about research from different cultural perspectives. This pilot study will explore how genetics researchers and indigenous communities can collaborate.