Center on the Ethics of Indigenous Genomic Research

总结 美国印第安人和阿拉斯加原住民对基因组学的担忧有据可查，但可悲的是， 仍然没有得到充分解决。这继续损害原住民对基因组学的参与 美国人通过投资于社区主导的 对伦理、法律的和社会影响的研究，但这需要共同努力建立基础设施 无论是在学术界还是在社会上在我们的第一个四年的资金，该中心对 土著基因组研究的伦理问题已经建立了一个联盟，部落研究企业在其中 与来自俄克拉荷马州大学的教职员工和学生共同领导研究和培训。未来 在这一资助阶段，我们寻求在此基础上为研究界带来新的合作伙伴， 为新的美洲印第安人和阿拉斯加原住民基因组研究提供动力。我们有三个具体的 目的： 1)扩展AI/AN社区网络，引领ELSI实证研究 a）推进关于基因组研究、生物库和数据共享的对话，特别是在俄克拉荷马州 B）通过试点研究方案，在全国范围内促进新社区的工作 2)推进对AI/AN社区当前ELSI问题的思考 a）与社区伙伴合作，确定尚未解决的ELSI问题 B）召集学术界和社区合作伙伴，推动这些领域的学术研究 3)为AI/AN ELSI研究培养下一代领导者 a）通过与俄克拉荷马州大学的NHGRI多样性行动计划R25的持续整合 B）通过博士后奖学金计划 c）通过一项计划，培养和支持社区研究领导人 我们希望从CEER资助的最后阶段出现一个社区和大学网络， 基地的研究人员和俄克拉荷马州大学的一个学术中心能够支持下一个 美洲印第安人和阿拉斯加原住民ELSI研究的一代。

Summary American Indian and Alaska Native concerns about genomics are well documented, but are sadly all too often still not adequately addressed. This continues to compromise participation in genomics by Indigenous Americans. There are substantial opportunities to change these dynamics by investing in community-led research on ethical, legal, and social implications, but this requires a concerted effort to build the infrastructure for this work, both in the academy and in the community. In our first four years of funding, the Center on the Ethics of Indigenous Genomic Research has created a consortium in which tribal research enterprises have jointly led research and training with faculty, staff, and students from the University of Oklahoma. In the next phase of this funding, we seek to build on this foundation to bring new partners into the research community, generating momentum for new American Indian and Alaska Native genomic research. We have three specific aims: 1) to extend a network of AI/AN communities leading empirical ELSI research a) to advance dialogue on genomic research, biobanking, and data sharing in Oklahoma specifically b) to stimulate work in new communities nationally through a pilot research program 2) to advance thinking about current ELSI concerns in AI/AN communities a) by working with community partners to identify unresolved ELSI questions b) by convening academic and community partners to advance scholarship in these areas 3) to train the next generation of leaders for AI/AN ELSI research a) through ongoing integration with the University of Oklahoma’s NHGRI Diversity Action Plan R25 b) through a postdoctoral fellowship program c) through a program to develop and support community research leaders We expect to emerge from this final phase of CEER funding with a network of community- and university- based researchers and an academic center at the University of Oklahoma capable of supporting the next generation of American Indian and Alaska Native ELSI research.