Risk, Reward, and the Double-Edged Sword: Perspectives on Pharmacogenetic Research and Clinical Testing Among Alaska Native People.

Shaw JL, Robinson R, Starks H, Burke W, Dillard DA.

Source

Jennifer L. Shaw, Renee Robinson, and Denise A. Dillard are with the Southcentral Foundation Research Department, Anchorage, AK. Helene Starks and Wylie Burke are with the University of Washington, Seattle.

Abstract

Objectives. Pharmacogenetic 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. Methods. We 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. Results. Potential 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. Conclusions. Alaska 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. (Am J Public Health. Published online ahead of print October 17, 2013: e1-e6. doi:10.2105/AJPH.2013.301596).