Center on the Ethics of Indigenous Genomic Research
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.