lunes, 19 de mayo de 2014

Direct-to-consumer genomics on the scales of autonomy -- Vayena -- Journal of Medical Ethics

Direct-to-consumer genomics on the scales of autonomy -- Vayena -- Journal of Medical Ethics

J Med Ethics doi:10.1136/medethics-2014-102026
  • Current controversy

Direct-to-consumer genomics on the scales of autonomy

Open Access
  1. Effy Vayena
  1. Correspondence toDr Effy Vayena, Institute of Biomedical Ethics, University of Zurich, Pestalozzistrasse 24, Zurich 8032, Switzerland;
  • Received 8 January 2014
  • Revised 4 March 2014
  • Accepted 9 April 2014
  • Published Online First 5 May 2014


Direct-to-consumer (DTC) genetic services have generated enormous controversy from their first emergence. A dramatic recent manifestation of this is the Food and Drug Administration's (FDA) cease and desist order against 23andMe, the leading provider in the market. Critics have argued for the restrictive regulation of such services, and even their prohibition, on the grounds of the harm they pose to consumers. Their advocates, by contrast, defend them as a means of enhancing the autonomy of those same consumers. Autonomy emerges as a key battle-field in this debate, because many of the ‘harm’ arguments can be interpreted as identifying threats to autonomy. This paper assesses whether DTC genomic services are a threat to, or instead, an enhancement of, personal autonomy. It deploys Joseph Raz's account of personal autonomy, with its emphasis on choice from a range of valuable options. It then seeks to counter claims that DTC genomics threatens autonomy because it involves manipulation in contravention of consumers’ independence or because it does not generate valuable options which can be meaningfully engaged with by consumers. It is stressed that the value of the options generated by DTC genomics should not be judged exclusively from the perspective of medical actionability, but should take into consideration plural utilities. Finally, the paper ends by broaching policy recommendations, suggesting that there is a strong autonomy-based argument for permitting DTC genomic services, and that the key question is the nature of the regulatory conditions under which they should be permitted. The discussion of autonomy in this paper helps illuminate some of these conditions.

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