Abstract
As genetic testing technology advances, genetic testing will move into standard practice in the primary care setting. Genetic research, testing, and return of results are complex topics that require input from Alaska Native and American Indian (ANAI) communities as policies are developed for implementation. This study employed a day and half long public deliberation with ANAI primary care patients to elicit value-laden views of genetic research, testing, and return of results. Participants emphasized the need for a balance between the potential for genetics research, testing, and return of results to empower individuals and improve health with the potential to expose individuals and communities to privacy breaches, discrimination, and emotional harms. Public deliberation was well received by this group of participants and elicited rich discussion on the complex topic of genetic research, testing, and return of results.
Highlights
Genetic research with Alaska Native and American Indian (ANAI) people has a complex history
The deliberative community engagement methodology allowed for ANAI community members to have a nuanced discussion on genetic research, testing, and return of results in this tribal health care system
In the week following the deliberation, we developed a summary report to describe the main concerns and suggestions regarding the return of results from genetic tests
Summary
Genetic research with Alaska Native and American Indian (ANAI) people has a complex history. Groups underrepresented in research have been subject to missteps and mistreatment by the research community. Transgressions in the ethical conduct of research have ranged from failures to be inclusive and transparent, share research results and other benefits, or respect group and individuals’ rights and confidentiality to engaging in research that stigmatizes ANAI people and violates cultural values [1,2,3]. Due to research harms that have occurred within genetic studies and health studies in general, many ANAI communities are understandably skeptical of participating in health research generally and genetic research . As genetic research continues to advance, it has been suggested that there is an imperative to include ANAI communities to avoid widening health disparities [4, 5]. US Federal efforts, such as the All of Us Research Platform, have failed to consult appropriately with ANAI communities prior to targeted recruitment of ANAI people [6], despite ANAI tribal leaders’ clear concern [7]
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