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Commentary on ‘The right not to know and the obligation not to know’
  1. Benjamin Berkman
  1. Department of Bioethics, National Institutes of Health, Bethesda, MD 20892, USA
  1. Correspondence to Benjamin Berkman, Department of Bioethics, National Institutes of Health, Bethesda, MD 20892, USA; berkmanbe{at}

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The idea of a right not to know (RNTK) emerged in the late 20th century, largely in response to the early incorporation of genetic testing into clinical care. While a few commentators took a more absolute view about the strength of the RNTK, most of the scholarship was openly sceptical of the concept, or at least was willing to acknowledge that the RNTK was defeasible.1 After two decades of relative quiet, it was surprising, then, that the RNTK reappeared with a seemingly widespread consensus that it deserved to be treated as an absolute right. In response to the American College of Medical Genetics and Genomics recommendation2 to actively search for a limited set of high-value medical variants as a default (ie, without soliciting the patient’s preference to know or not know that information) many bioethics commentators came forward to endorse a strong RNTK.3

While ‘deliberate ignorance’ is a complicated moral and psychological concept,4 I was and remain sceptical of a strong RNTK in all cases, and largely support the novel arguments put forth by Ben Davies. But he makes two moves that deserve additional discussion and analysis. Specifically, I have concerns about conflating the provision of medical information with the separate decision about whether or not to act on …

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  • Contributors BB conducted this research and is the sole author of the article.

  • Funding This research was supported in part by the National Institutes of Health Clinical Center and the Intramural Research Program of the National Human Genome Research Institute.

  • Disclaimer The views herein are the author’s own and do not represent the views or policies of the Department of Health and Human Services or the National Institutes of Health.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Commissioned; internally peer reviewed.

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