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

Kyle van Oosterum1

  • 1Faculty of Philosophy, Oxford University, Oxford, UK kyle.vanoosterum@philosophy.ox.ac.uk.

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|January 7, 2022
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Summary
This summary is machine-generated.

Direct-to-consumer (DTC) genetic testing offers autonomy benefits but may diminish genetic privacy. This reduction in privacy can harm an individual's autonomy by limiting their valuable life choices.

Keywords:
genetic counselinggenetic privacypersonal autonomy

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Area of Science:

  • Bioethics
  • Genetics
  • Personal Autonomy

Background:

  • Direct-to-consumer (DTC) genomic services are increasingly accessible.
  • Vayena argues for a strong autonomy-based justification for permitting these services.
  • Concerns exist regarding the impact of DTC genomics on individual autonomy and privacy.

Purpose of the Study:

  • To analyze the autonomy-based arguments surrounding DTC genomic services.
  • To evaluate the potential harms to autonomy arising from diminished genetic privacy.
  • To balance the autonomy-related gains against the autonomy-related harms of DTC genetic testing.

Main Methods:

  • Conceptual analysis linking privacy and the Razian conception of autonomy.
  • Examination of how genetic privacy diminishment impacts individual autonomy.
  • Critique of the autonomy-based arguments for DTC genomic services.

Main Results:

  • Diminished genetic privacy constitutes an autonomy-related harm.
  • DTC genetic testing can reduce the range of valuable options available to individuals.
  • The exercise of autonomy by consumers may be negatively impacted by privacy loss.

Conclusions:

  • The potential decrease in genetic privacy presents a significant autonomy-related harm.
  • A comprehensive ethical assessment must balance privacy harms against autonomy gains from DTC genomics.
  • DTC genetic testing's impact on autonomy requires careful consideration beyond purported benefits.