Partnership with the Confederated Salish and Kootenai Tribes: Establishing an Advisory Committee for Pharmacogenetic Research

Morales, Chelsea; Muzquiz, Lee Anna I; Howlett, Kevin; Azure, Bernie; Bodnar, Brenda; Finley, Vernon; Incashola, Tony; Mathias, Cheryl; Laukes, Cindi; Burke, Wylie; Pershouse, Mark A.; Putnam, Elizabeth A.; Trinidad, Susan Brown; James, Rosalina; Woodahl, Erica L.

doi:10.1353/cpr.2016.0029

Cited by 10 publications

(7 citation statements)

References 34 publications

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“…Our conversations led to the formation of the Northwest-Alaska Pharmacogenomic Research Network (2009-present), a collaboration involving three Tribal health organizations and four universities in the Pacific Northwest (15,103,140), directed by Ken Thummel, chair of the Department of Pharmaceutics in the School of Pharmacy-who had been a key science advisor to the Center for Genomics and Healthcare Equality-and myself. The proposal called for the study of the pharmacogenomics of drugs used in cardiovascular disease and cancer treatment, reflecting the priorities of our Tribal partners.…”

Section: A New Venture: a Regional Pharmacogenomics Research Networkmentioning

confidence: 99%

Untitled

2021

Annu. Rev. Genom. Hum. Genet.

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Genomic information is poised to play an increasing role in clinical care, extending beyond highly penetrant genetic conditions to less penetrant genotypes and common disorders. But with this shift, the question of clinical utility becomes a major challenge. A collaborative effort is necessary to determine the information needed to evaluate different uses of genomic information and then acquire that information. Another challenge must also be addressed if that process is to provide equitable benefits: the lack of diversity of genomic data. Current genomic knowledge comes primarily from populations of European descent, which poses the risk that most of the human population will be shortchanged when health benefits of genomics emerge. These two challenges have defined my career as a geneticist and have taught me that solutions must start with dialogue across disciplinary and social divides.

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Section: A New Venture: a Regional Pharmacogenomics Research Networkmentioning

confidence: 99%

Untitled

2021

Annu. Rev. Genom. Hum. Genet.

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“…Tribal Health leadership helped us establish a community advisory board comprised of members of the community to ensure that Tribal interests were prioritized and to provide guidance on community interactions. 2 The structures of Tribal governance provided a clearer path to identifying the appropriate approval processes for our research and aided our ability to sustain ongoing engagement with the broader CSKT community. Examples of this engagement include organizing precision medicine workshops; presenting the research partnership across the Flathead Reservation to various stakeholders (e.g., CSKT Tribal Council, Tribal Health clinics, Salish Kootenai College, Tribal-owned businesses, and governmental agencies); and working with our advisory board to develop community-appropriate strategies for disseminating research results in local newspapers and on social media.…”

Section: Perspectivesmentioning

confidence: 99%

“…"I think that [new research projects] would have to do the same things that [these pharmacogenetics researchers] did." 2 Understanding and focusing on the health priorities of a community may ensure that research adds value. Our community-academic pharmacogenetics partnership began because of community research priorities in oncology and a desire to improve outcomes in cancer treatment.…”

Section: Perspectivesmentioning

confidence: 99%

“…Notably, these partnerships began 3 years prior to securing grant funding. Tribal Health leadership helped us establish a community advisory board comprised of members of the community to ensure that Tribal interests were prioritized and to provide guidance on community interactions . The structures of Tribal governance provided a clearer path to identifying the appropriate approval processes for our research and aided our ability to sustain ongoing engagement with the broader CSKT community.…”

Section: Considerations For Engaging Rural and Underserved Communitiementioning

confidence: 99%

“…But authentic community‐involved research, I definitely would [participate].” Another member drew an even stronger conclusion. “I think that [new research projects] would have to do the same things that [these pharmacogenetics researchers] did.”…”

Section: Considerations For Engaging Rural and Underserved Communitiementioning

confidence: 99%

See 2 more Smart Citations

Democratizing Precision Medicine Through Community Engagement

Fohner

Volk

Woodahl

2019

Clin Pharma and Therapeutics

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Precision medicine research with American Indian and Alaska Native communities: Results of a deliberative engagement with tribal leaders

Trinidad¹,

Blacksher²,

Woodbury

et al. 2022

Genetics in Medicine

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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.

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Partnership with the Confederated Salish and Kootenai Tribes: Establishing an Advisory Committee for Pharmacogenetic Research

Cited by 10 publications

References 34 publications

Untitled

Untitled

Democratizing Precision Medicine Through Community Engagement

Precision medicine research with American Indian and Alaska Native communities: Results of a deliberative engagement with tribal leaders

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