ArticleAmerican journal of public health2013
Risk, reward, and the double-edged sword: perspectives on pharmacogenetic research and clinical testing among Alaska Native people.
Article in American journal of public health, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers, 2 of them syntheses that pooled it.
What it found
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The trial behind it
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Who cites it
37 citing papers in PubMed, 2 syntheses or guidelines pooled it, 47 citations in OpenAlex.
- A Systematic Review Exploring Empirical Pharmacogenomics Research Within Global Indigenous Populations.Molecular genetics & genomic medicine · 2024Pooled it
- A systematic literature review of Native American and Pacific Islanders' perspectives on health data privacy in the United States.Journal of the American Medical Informatics Association : JAMIA · 2020Pooled it
- Virtual deliberation on genetics research: report-out of key themes from Diné (Navajo) research & healthcare professionals.Journal of community genetics · 2026Article
- Perspectives on Using Pharmacogenomics to Guide Tobacco Cessation: Survey Results From an American Indian Community.Clinical and translational science · 2025Article
- Culturally safe and ethical biomarker and genomic research with Indigenous peoples-a scoping review.BMC global and public health · 2024Article
- Qualitative genomic research with Indigenous peoples: a scoping review of participatory practice.BMJ global health · 2024Article
- Use of Cognitive Interviews in the Development of a Survey Assessing American Indian and Alaska Native Adult Perspectives on Genetics and Biological Specimens.International journal of environmental research and public health · 2024Article
- Patient perspectives on pharmacogenomic (PGx) testing for antidepressant prescribing in primary care: a qualitative description study.Journal of community genetics · 2024Article
- Assessment of the current status of real-world pharmacogenomic testing: informed consent, patient education, and related practices.Frontiers in pharmacology · 2024Article
- Genetic research with Indigenous Peoples: perspectives on governance and oversight in the US.Frontiers in research metrics and analytics · 2023Article
- Preferences for pharmacogenomic testing in polypharmacy patients: a discrete choice experiment.Personalized medicine · 2022Article
- Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation.Journal of empirical research on human research ethics : JERHRE · 2022Article
- A Scoping Review of Attitudes and Experiences with Pharmacogenomic Testing among Patients and the General Public: Implications for Patient Counseling.Journal of personalized medicine · 2022Article
- 2021 McKusick Leadership Award: Learning from communities.American journal of human genetics · 2022Article
- Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes.Frontiers in genetics · 2022Article
- Fostering Ethical, Legal, and Social Implications Research in Tribal Communities: The Center for the Ethics of Indigenous Genomic Research.Journal of empirical research on human research ethics : JERHRE · 2020Article
- Community Perspectives on Communicating About Precision Medicine in an Alaska Native Tribal Health Care System.Frontiers in communication · 2020Article
- An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation.PloS one · 2020Article
- Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research.Collaborations (Coral Gables, Fla.) · 2020Article
- Perspectives on communication and engagement with regard to collecting biospecimens and family health histories for cancer research in a rural Alaska Native community.Journal of community genetics · 2019Article
Corrections and comments
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Authors and funding
5 authors at 1 institution in 1 country.
Funding
Abstract
objectivesPharmacogenetic research and clinical testing raise important concerns for individuals and communities, especially where past medical research and practice has perpetrated harm and cultivated distrust of health care systems and clinicians. We investigated perceptions of pharmacogenetics among Alaska Native (AN) people.
methodsWe held four focus groups for 32 ANs in south central Alaska to elicit views about pharmacogenetics in general and for treatment of cardiovascular disease, breast cancer, depression, and nicotine addiction. We analyzed data for perceived risks and rewards of pharmacogenetics.
resultsPotential risks of pharmacogenetics included health care rationing, misuse of information, and stigma to individuals and the AN community. Potential rewards included decreased care costs, improved outcomes, and community development. Participants also discussed 8 contingent conditions that could mitigate risks and increase pharmacogenetic acceptability.
conclusionsAlaska Natives perceive pharmacogenetics as potentially benefitting and harming individuals, communities, and health systems, depending on methods and oversight. Researchers, clinicians, and administrators, especially in community-based clinic and health care systems serving minority populations, must address this "double-edged sword" to effectively conduct pharmacogenetics.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.