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From proband to provider: is there an obligation to inform genetic relatives of actionable risks discovered through direct-to-consumer genetic testing?
  1. Jordan A Parsons1,
  2. Philip E Baker2
  1. 1Centre for Ethics in Medicine, University of Bristol, Bristol, UK
  2. 2Oxford Medical School, University of Oxford, Oxford, UK
  1. Correspondence to Jordan A Parsons, Centre for Ethics in Medicine, University of Bristol, Bristol, UK; jordan.parsons{at}bristol.ac.uk

Abstract

Direct-to-consumer genetic testing is a growing phenomenon, fuelled by the notion that knowledge equals control. One ethical question that arises concerns the proband’s duty to share information indicating genetic risks in their relatives. However, such duties are unenforceable and may result in the realisation of anticipated harm to relatives. We argue for a shift in responsibility from proband to provider, placing a duty on test providers in the event of identified actionable risks to relatives. Starting from Parker and Lucassen’s (2004) 'joint account model', we adapt Kilbride’s (2018) application of the rule of rescue and balance it against the relative’s right not to know, placing responsibility on the providers of direct-to-consumer genetic testing. Where the risk of disease to a relative is actionable, we argue providers ought to share results even in the face of the proband’s objections. Confidentiality issues are navigated by a pre-emptive consent model, whereby consumers agree to the sharing of certain information with their relatives ahead of testing and as a condition of testing. When a relative is informed, the proband’s privacy is protected by maximal deidentification, and the rights of the relative are met by a stepwise approach to informing that allows them to decide how much information they receive.

  • confidentiality/privacy
  • genethics
  • genetic information
  • genetic screening/testing
  • informed consent

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Footnotes

  • Twitter @Jordan_Parsons_, @philipbaker8

  • Contributors JAP conceived the idea and wrote an initial draft. Both authors contributed to critical revisions. Both authors read and approved the final manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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