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.
Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers
Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled
A framework for enhancing ethical genomic research with Indigenous communities
Last updated: December 17, 2020