Beyond clinical utility: The multiple values of DTC genetics

Area of Science:

• Bioethics
• Sociology of Health and Medicine
• Genetics

Background:

• Direct-to-consumer (DTC) genetic testing is controversial, with a consensus on its limited clinical utility.
• Existing literature suggests DTC tests possess value and utility outside traditional clinical settings.
• Current ethical and regulatory debates predominantly focus on clinical aspects, overlooking broader implications.

Purpose of the Study:

• To advocate for a comprehensive, multi-faceted conceptualization of utility and value in DTC genetic testing.
• To enrich ethical and social discussions surrounding DTC genetic testing by including non-clinical benefits.
• To explore the personal, social, economic, and political dimensions of DTC genetic testing's value.

Main Methods:

• Analysis of empirical and conceptual literature on DTC genetic testing.
• Argumentative approach to reframe the understanding of utility and value.
• Examination of personal, social, and economic factors influencing DTC test adoption and implications.

Main Results:

• DTC genetic tests provide personal value (entertainment, learning) and social value (relating to others).
• Understanding these non-clinical values helps explain user engagement and potential secondary/tertiary data uses.
• Broader utility considerations highlight economic, social, and political aspects, including power asymmetries in data usage.

Conclusions:

• A wider view of utility is crucial for a nuanced ethical and social discourse on DTC genetics.
• Considering entertainment, learning, and social connection values can illuminate user motivations.
• Acknowledging economic and political dimensions, such as data governance and power imbalances, is essential for future regulatory challenges.