Table 1. Benefits and risks pertaining to genetic research, testing, and return of results discussed at deliberation event.

Benefits

Risks

Individual empowerment (‘knowledge is power’, “My body, my choice”) • Personally useful (e.g., can know what to expect and can take steps to improve health) • Insight into identity and family history, reconnecting families • DTC* tests may give individuals access to tests that healthcare providers may choose to deny Disease prevention and improved public health • Individual—Early detection, improved preventive care, better support systems (e.g., health education and counseling) for individuals • Collective—Public health knowledge (more knowledge, more initiatives) • Raised awareness and empowerment for community and tribal leadership • Improved understanding of why some communities are sicker than others • Improved understanding of role of environmental and social conditions • Emphasis on healthy ANAI traditional diets and activities (e.g., fishing, hunting

Privacy Breaches and Misuse of Results • Unintentional or intentional breaches that reveal personal identities and genetic information • Challenges of maintaining individual privacy in a health care system that include close social and family relationships (e.g., ““we all know people here at the hospital”) • Discrimination in employment or healthcare insurance on basis of one’s genetic results • Who controls access to information, for what purposes would it be shared, and whose property are the results? And, who decides these matters? Return of result challenges • Mistakes/errors (e.g., validity of results, wrong results) • Interpretation of results (e.g., uncertainty, what does it mean for my health?) • Effective communication (e.g., languages other than English, culturally appropriate, plain language, understood across generations) • Poor provider communication (e.g., causing confusion or misunderstanding) • Emotional impacts (e.g., worry, fear, distress, substance abuse, suicide)

*DTC–Direct to Consumer