Abstract
Purpose: Amid calls for greater diversity in precision medicine research, the perspectives of Indigenous people have been underexplored. Our goals were to understand tribal leaders’ views regarding the potential benefits and risks of such research, explore its priority for their communities, and identify the policies and safeguards they consider essential. This article reports on the participants’ perspectives regarding governance and policy, stewardship and sharing of information and biospecimens, and informed consent. Methods: After informal local dialogs with 21 tribal leaders, we convened a 2.5-day deliberation with tribal leaders (N = 10) in Anchorage, Alaska, in June 2019 using a combination of small group and plenary discussion, ranking, and voting exercises to explore the perspectives on precision medicine research. Results: Tribal sovereignty was central to participants’ ideas about precision medicine research. Although views were generally positive, provided that the appropriate controls were in place, some kinds of research were deemed unacceptable, and the collection of certain biospecimens was rejected by some participants. Differences were observed regarding the acceptability of broad consent. Conclusion: Tribal leaders in this study were generally supportive of precision medicine research, with the caveat that tribal oversight is essential for the establishment of research repositories and the conduct of research involving Indigenous participants.
| Original language | English |
|---|---|
| Pages (from-to) | 622-630 |
| Number of pages | 9 |
| Journal | Genetics in Medicine |
| Volume | 24 |
| Issue number | 3 |
| DOIs | |
| State | Published - Mar 2022 |
Funding
The authors have many to thank, including the tribal review bodies that approved this study; the Southcentral Foundation that hosted the event; and the deliberants who took time away from their families and responsibilities to help us with this project, including Michelle Baker; Agnes Baptiste; Brenda Bodnar; Karen Caindec; Myrna DuMontier; Donna Galbreath; Charmel Gillin; David Harrison; Henry Hunter, Sr; Lloyd Irvine; Patricia Kelly; Robert Lekander; Stephen Winn Lozar; Jamie Lozeau; Henry Lupie; James Nicori; Bobbi Dyan Outten; Ileen Sylvester; and Susie Walter. One deliberant remains anonymous. This work was supported by the National Human Genome Research Institute (5R01HG009500) and the National Institute for General Medical Sciences (5P01GM116691). Conceptualization: B.B.B. W.B. V.Y.H. E.L.W.; Formal analysis: E.B. V.Y.H. S.B.T.; Funding acquisition: B.B.B. W.B. V.Y.H. E.L.W.; Methodology: E.B. V.Y.H. S.B.T.; Project administration: B.B.B. V.Y.H. S.E.H. E.L.W. R.B.W.; Supervision: B.B.B. W.B. V.Y.H. E.L.W.; Writing-original draft: E.B. V.Y.H. S.B.T.; Writing-review and editing: S.B.T. E.B. R.B.W. S.E.H. W.B. E.L.W. B.B.B. V.Y.H. This study was reviewed by the Yukon-Kuskokwim Health Corporation Human Studies Committee and their Executive Board, the Oregon Health & Science University Institutional Review Board (IRB), the Alaska Area IRB, the Southcentral Foundation Board of Directors, and the IRBs of the Salish Kootenai College and University of Montana. Per local IRB requirements, informed consent was provided in written form by Yukon-Kuskokwim Delta and Confederated Salish and Kootenai Tribes participants and verbally by Southcentral Foundation participants. The authors have many to thank, including the tribal review bodies that approved this study; the Southcentral Foundation that hosted the event; and the deliberants who took time away from their families and responsibilities to help us with this project, including Michelle Baker; Agnes Baptiste; Brenda Bodnar; Karen Caindec; Myrna DuMontier; Donna Galbreath; Charmel Gillin; David Harrison; Henry Hunter, Sr; Lloyd Irvine; Patricia Kelly; Robert Lekander; Stephen Winn Lozar; Jamie Lozeau; Henry Lupie; James Nicori; Bobbi Dyan Outten; Ileen Sylvester; and Susie Walter. One deliberant remains anonymous. This work was supported by the National Human Genome Research Institute (5R01HG009500) and the National Institute for General Medical Sciences (5P01GM116691).
| Funders | Funder number |
|---|---|
| Southcentral Foundation | |
| 5R01HG009500 | |
| P01GM116691 | |
| Oregon Health and Science University |
Keywords
- American Indian and Alaska Native
- Community engagement
- Precision medicine
- Public deliberation
- Research ethics