Woodbury R Brian, Beans Julie A, Hiratsuka Vanessa Y
Southcentral Foundation, Anchorage, AK, USA.
J Community Genet. 2025 Mar 3. doi: 10.1007/s12687-025-00779-2.
Precision medicine holds promise for improving health care by tailoring disease treatment and prevention efforts to the needs of individual patients. It also raises ethical questions related to equitable distribution of the benefits of precision medicine; data management, including the terms of data ownership, sharing, and security; and, the nature and extent of community engagement in and oversight of research. These questions are particularly salient for minoritized communities that have been harmed by unethical research practices and often deprived the full benefit of advances in medical science. Understanding the perspectives of these communities is essential to the design and conduct of ethical and effective precision medicine research. This study explored perspectives on the acceptability, feasibility, value, and benefits and harms of precision medicine research among Alaska Native and American Indian (ANAI) peoples. We conducted four focus groups with ANAI individuals who receive primary care from a Tribal health organization in Anchorage, Alaska. Participants were willing to engage in precision medicine research provided specific requirements were met. Research must be conducted by the Tribal health organization or another trusted partner, community health priorities must drive the research agenda, and researchers must employ robust data protections to guard against loss of data security and maintain control over data use and access. These requirements work collectively to ensure research benefits and respects Tribal sovereignty. These findings could help inform efforts to design and implement precision medicine research programs tailored to concerns of ANAI peoples.
精准医学有望通过根据个体患者的需求定制疾病治疗和预防措施来改善医疗保健。它也引发了一些伦理问题，这些问题涉及精准医学益处的公平分配；数据管理，包括数据所有权、共享和安全的条款；以及社区参与研究和对研究进行监督的性质和程度。对于那些因不道德的研究行为而受到伤害且常常被剥夺医学科学进步的全部益处的少数族裔社区来说，这些问题尤为突出。了解这些社区的观点对于设计和开展符合伦理且有效的精准医学研究至关重要。本研究探讨了阿拉斯加原住民和美国印第安人（ANAI）对精准医学研究的可接受性、可行性、价值以及益处和危害的看法。我们与从阿拉斯加安克雷奇的一个部落卫生组织接受初级保健的ANAI个体进行了四个焦点小组讨论。如果满足特定要求，参与者愿意参与精准医学研究。研究必须由部落卫生组织或另一个可信赖的合作伙伴进行，社区卫生优先事项必须推动研究议程，并且研究人员必须采用强有力的数据保护措施，以防止数据安全丢失并保持对数据使用和访问的控制。这些要求共同作用以确保研究既能带来益处又能尊重部落主权。这些发现有助于为设计和实施针对ANAI人群关注点的精准医学研究项目提供参考。
