Personal utility in genomic testing: is there such a thing?

Area of Science:

• Genomic Medicine
• Bioethics
• Health Law

Background:

• The concept of personal utility is frequently invoked in ethical and regulatory debates surrounding genomic testing.
• It is used to support direct-to-consumer genomic testing and the return of individual research results.
• A systematic definition of personal utility has been lacking.

Purpose of the Study:

• To provide a systematic definition of personal utility in the context of genomic testing.
• To explore the spectrum between clinical utility and personal perceptions of utility.
• To propose a normative definition that clarifies the conditions for personal utility.

Main Methods:

• Literature review and conceptual analysis of 'personal utility'.
• Examination of healthcare and consumer perspectives on personal utility.
• Development of a normative definition based on information and potential use.

Main Results:

• Personal utility is distinct from perceived utility; expert judgment may be needed to assess it.
• A normative definition requires both information and potential use as necessary conditions.
• Existing healthcare and consumer perspectives are deemed insufficient.

Conclusions:

• Personal utility in genomic testing is not unlimited and requires clinical validity and reasonable potential use.
• The proposed definition helps differentiate true personal utility from mere perceived utility.
• Ethical evaluation and regulation of genomic tests should incorporate this nuanced understanding of personal utility.