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

• Published in: American journal of public health (1971) Vol. 103; no. 12; pp. 2220 - 2225
• Main Authors: SHAW, Jennifer L, ROBINSON, Renee, STARKS, Helene, BURKE, Wylie, DILLARD, Denise A
• Format: Journal Article
• Language: English
• Published: Washington, DC American Public Health Association 01.12.2013
• Subjects: Adolescent; Adult; Alaska - ethnology; Biological and medical sciences; Biomedical Research; Breast cancer; Cardiovascular disease; Clinical medicine; Consent; Consortia; Ethics; Female; Focus Groups; General aspects; Genetic Testing; Genetics; Health care policy; Health Knowledge, Attitudes, Practice; Health Service Delivery; Health services; Humans; Inuits - genetics; Inuits - psychology; Male; Medical research; Medical sciences; Miscellaneous; Native Americans; Native North Americans; Other Race/Ethnicity; Pharmacogenetics; Prevention and actions; Primary care; Public health; Public health. Hygiene; Public health. Hygiene-occupational medicine; Qualitative Research; Research and Practice; Review boards; Reward; Risk Assessment; Rural Health; Studies; Trust; Young Adult; Alaska; United States; North America; America; United States > US; Amerindian; Perspective; Pharmacogenetics; Scientific research; Risk factor; Genetics; Risk; Reward; Medical screening; Ethnic group; Public health
• ISSN: 0090-0036; 1541-0048
• DOI: 10.2105/AJPH.2013.301596

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. 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. 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. 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.