Knowledge and Attitudes about Privacy and Secondary Data Use among African-Americans Using Direct-to-Consumer Genetic...

Area of Science:

• Genomics
• Bioethics
• Consumer Health

Background:

• The direct-to-consumer genetic testing (DTC GT) market is expanding rapidly.
• Research on DTC GT user experiences has largely overlooked underrepresented populations.
• African-American consumer perspectives on DTC GT remain underexplored.

Purpose of the Study:

• To explore African-American consumers' personal experiences with DTC GT.
• To understand African-American consumers' perceptions of DTC GT.
• To compare African-American DTC GT experiences with those of European American consumers.

Main Methods:

• Conducted 20 semi-structured qualitative interviews with African-American DTC GT users.
• Utilized inductive content analysis for transcribed interviews.
• Collected data between February 2017 and February 2020.

Main Results:

• Participants generally held positive views of DTC GT.
• Awareness of secondary data use was present, but knowledge of company practices was limited.
• African-American participants showed more trust in DTC GT companies than healthcare providers, with heightened concerns regarding law enforcement data usage and a stronger emphasis on community considerations compared to European American participants.

Conclusions:

• African-American consumers are open to research and some non-research uses of DTC GT data, contingent on informed consent.
• Participants lacked detailed knowledge of company practices concerning secondary data use.
• Compared to European American counterparts, African-American participants expressed greater concerns about data usage by medical and law enforcement entities and emphasized community engagement.