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Privacy, autonomy and direct-to-consumer genetic testing: a response to Vayena

Abstract

In Vayena’s article, ‘direct-to-consumer (DTC) genomics on the scales of autonomy’, she claims that there may be a strong autonomy-based argument for permitting DTC genomic services. In this response, I point out how the diminishment of one’s genetic privacy can cause a relevant autonomy-related harm which must be balanced against the autonomy-related gains DTC services provide. By drawing on conceptual connections between privacy and the Razian conception of autonomy, I show that DTC genetic testing may decrease the range of valuable options individuals possess, which impacts the extent to which would-be consumers can exercise their autonomy.

  • genetic counseling
  • genetic privacy
  • personal autonomy

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