Perspectives on Precision Medicine in a Tribally Managed Primary Care Setting

Abstract

Background

Precision medicine (PM) research and clinical application is moving forward at a rapid pace. To ensure ethical inclusion of all populations in PM, in-depth understanding of diverse communities’ views of PM research and PM implementation is necessary.

Methods

Semi-structured interviews were conducted to explore perspectives on PM in a tribally managed healthcare organization. Thematic analysis was used to analyze data from 46 interviews.

Results

Participants described gains in diagnostic efficiency, risk identification for preventable disease, and the advancement of population-specific biomedical research as key benefits of PM. Concerns expressed related to privacy risks associated with data-sharing, overpromising on PM, and managing patient expectations related to PM. Stakeholders encouraged PM implementation to be preceded by health education activities that leverage a range of communication strategies.

Conclusion

Perspectives described in this study may aid in and should be considered prior to implementation of PM in this and other healthcare systems, especially those serving diverse populations.

Keywords:

• Precision medicine
• community views
• American Indian
• Alaska Native
• healthcare system

Acknowledgments

We would like to acknowledge Naomi George and Lisa Martinez for recruitment assistance. We would also like to acknowledge the partners within the Center for Ethics on Indigenous Genomic Research.

Author contributions

Drs. Hiratsuka and Spicer conceived of, secured funding, and designed this work. Ms. Beans and Mr. Woodbury collected the data. Dr. Hiratsuka, Ms. Beans, Mr. Woodbury, and Mr. Wark analyzed the data. All authors contributed to data interpretation, drafting, and approved the final manuscript.

Conflicts of interest

No potential conflicts of interests were disclosed.

Ethical approval

This protocol was reviewed and approved by the Alaska Area Institutional Review Board (AAIRB# 2016-09-037). In addition, Southcentral Foundation Research Review Committees and Board of Directors reviewed and approved this study protocol as well as a draft of this manuscript prior to journal submission.

Additional information

Funding

This research was funded by the National Human Genome Research Institute of the National Institutes of Health, grant numbers RM1HG009042 and R01HG009500 and the National Institute of General Medical Services, Native American Research Centers for Health (NARCH), grant number S06GM123545. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.