NIH and Alaska Native leaders identify how to achieve socially responsible genomics research
A workshop led by Alaska Native people provides a path towards collaborative, community-driven genomics research.
In August 2020 the Centers for Disease Control and Prevention identified that Indigenous groups such as Alaska Native and American Indian people were at a higher risk for COVID-19. Researchers are still assessing the full impact of the disproportionate toll because of the limited representation of Indigenous peoples in numerous datasets and analyses used to make health policy decisions.
While issues of inclusion persist, Alaska Native people and the genomics community are engaging in more dialogue and trust-building. In recent years, tribal leaders and scientists have discussed the future of genomics research among Alaska Native people in multiple small sessions.
One such critical workshop took place in late 2018. Two Alaska Native health organizations — Southcentral Foundation (SCF) and the Alaska Native Health Board (ANHB) — co-sponsored a workshop on genomic research with the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health (NIH). The workshop's goal was to cultivate trust and build relationships between the genomic research community and Alaska Native people, a purpose many consider to be as important as performing research itself.
The 2018 workshop revealed the barriers and opportunities that exist when engaging Alaska Native people in genomics research. The perspectives of the Alaska Native people, NHGRI and NIH staff were published this fall in the journal Genetics in Medicine.
Credit: Ernesto Del Aguila, NHGRI.
A long history of distrust
Alaska Native people have been historically underrepresented in biomedical studies, especially in genomics research. There is an expanding effort to include Indigenous populations like Alaska Native people in genomic analyses to ensure the benefits of genomic medicine are equitably applicable to these communities. However, the genomics community-at-large is reckoning with a history of unethical research that has caused Alaska Native populations to be wary of sharing their genetic data with researchers and the federal government.
Alaska Native communities face disproportionately higher rates of cardiovascular disease, diabetes, cancer and infectious diseases. Many in the community recognize the potential of genomic research to improve treatment options and benefit Alaska Native people, with some researchers having successfully partnered with Alaska Native communities in genomic research. However, Alaska Native communities are also aware of the dual nature of providing genomic data. Many in the Alaska Native community realize that if they release control of their genomic information, stigmatizing results descriptions may reinforce historically harmful narratives about Alaska Native people. Alaska Native people, therefore, have justified cautiousness when sharing genomic data with the research community.
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.
About NHGRI and NIH
The National Human Genome Research Institute (NHGRI) is one of the 27 institutes and centers at the NIH, an agency of the Department of Health and Human Services. The NHGRI Division of Intramural Research develops and implements technology to understand, diagnose and treat genomic and genetic diseases. Additional information about NHGRI can be found at: www.genome.gov.
The National Institutes of Health (NIH) is the nation's medical research agency, includes 27 institutes and centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical and translational medical research, and is investigating the causes, treatments and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
Phone: (301) 402-0911
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Last updated: December 17, 2020