NIH and Alaska Native leaders identify how to achieve socially responsible genomics research

The 2018 workshop took place in Anchorage, Alaska, at Southcentral Foundation's Nuka Learning and Wellness Center and included 97 people representing three groups: Alaska Native tribal leadership and other representatives of tribal health organizations, academic and biomedical researchers with existing research partnerships with American Indian and Alaska Native people and federal agency representatives from the NIH and the Centers for Disease Control and Prevention’s Arctic Investigations Program. 

"Alaska Native people have developed an independent research infrastructure by engaging with their community and selecting research topics based on their priorities," said Vence Bonham, J.D., senior advisor to the NHGRI Director on genomics and health disparities, an associate investigator in the NHGRI's Social and Behavioral Research Branch and co-author on the paper. "Our goal was to begin the process of rebuilding trust with the community and to listen and learn."

Alaska has 229 federally recognized tribes, each with its own culture, norms and beliefs. Over 30 years, the tribes came together to develop a consortia model called the Alaska Tribal Health System. The system's founding principle is tribal sovereignty and respect, a framework commended by the workshop attendees. Within this structure, all research proposals that involve Alaska Native people must undergo tribal research approval processes that are deemed necessary and endorsed by each Alaska Native tribal nation, because each is a sovereign government.

Workshop members discussed appropriate guidelines for sharing Alaska Native genomic data. Funders and the scientific community-at-large have consistently promoted broad use and sharing of human genomic data, with the hope that — through responsible and altruistic use of such information — genomic medicine can be improved and provided to all. The workshop members discussed critical issues that remain a concern for Alaskan Native people. These included sharing data without the consent of research participants and the lack of transparency from researchers concerning how the data will be used in the future and securely stored. Another concern was the possibility of Alaska Native individuals not remaining anonymous and their privacy being breached, especially given their small populations and link to a specific geographic area.

Within Alaska Native communities, enhancing genomic research is framed around the ethical principles of tribal sovereignty and research regulations. Tribal leaders called for data-sharing policies rooted in both tribal sovereignty and individual and community consent of the use of their DNA. Researchers and NHGRI staff acknowledged the need to honor cultural flexibilities and exceptions for genomic data-sharing to be inclusive, honest and respectful. Also, by developing a framework that ensures that study participants have a say in the research process and are aware of their merits and drawbacks, communities can help such efforts be successful, unique and engaging.

"We understand the tremendous potential of genetic research," Karen Caindec, a member of Southcentral Foundation's Board of Directors, said. "For a tribal community, maintaining control of our genetic information is critical. It is not just the genetics of one consented individual, but of an entire family. We've learned that research can have vast implications for our people, both positive and negative. That is why we are careful to select research partners that respect our tribal authority and projects that will benefit our community, especially in the field of genomics." 

Alaska Native tribal representatives emphasized that the Alaska Tribal Health System values the improvement of health and wellness and that research must align with tribally determined health priority areas, such as cancer, behavioral health and impacts of environmental change. Given the finite resources available to Alaska Native people, researchers and federal agencies need to appreciate that tribal communities must prioritize the approval of research projects that directly align with their values and benefit tribal members. 

The workshop members also recognized that long-term relationships developed through authentic community engagement with Alaska Native people are critical to fostering a respectful and fruitful relationship. Tribal leaders ask that researchers show compassion and care for the communities' traditional knowledge and values, and that researchers listen and learn about the cultural perspectives of the tribal communities. 

Many participants observed that in-person communication is a richer and more powerful tool for building trust and empathy, much like the experience of participating in the workshop itself. Ultimately, meaningful and equitable distribution of genomic advances in treatment and care requires fundamental shifts in researchers' and funders' engagement practices with Indigenous groups like the Alaska Native people. 

"We came out of the workshop with a deep sense of kinship and responsibility," Michael Hahn, Tribal Engagement Team Lead at the NIH All of Us Research Program and a co-author on the paper, said. "We will continue to have such dialogues between each other and the Alaska Native communities. This is the first step to the right future." 

As highlighted in the 2020 strategic vision by NHGRI, diversity and inclusion in genomics research is an ongoing priority for the institute. The 2018 workshop is one effort in continuing dialogues and research initiatives to ensure systemic inclusion of underrepresented individuals in genomic research. Most importantly, it has laid the groundwork for meaningful engagement with Alaska Native communities.