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Genomic privacy, identity and dignity
  1. Shlomo Cohen1,
  2. Ro'i Zultan2
  1. 1Department of Philosophy, Ben-Gurion University of the Negev, Be'er Sheva, Israel
  2. 2Department of Economics, Ben-Gurion University of the Negev, Be'er Sheva, Israel
  1. Correspondence to Dr Shlomo Cohen, Department of Philosophy, Ben-Gurion University of the Negev, Be'er Sheva, Israel; shlomoe{at}bgu.ac.il

Abstract

Significant advancements towards a future of big data genomic medicine, associated with large-scale public dataset repositories, intensify dilemmas of genomic privacy. To resolve dilemmas adequately, we need to understand the relative force of the competing considerations that make them up. Attitudes towards genomic privacy are complex and not well understood; understanding is further complicated by the vague claim of ‘genetic exceptionalism’. In this paper, we distinguish between consequentialist and non-consequentialist privacy interests: while the former are concerned with harms secondary to exposure, the latter represent the interest in a private sphere for its own sake, as an essential component of human dignity. Empirical studies of attitudes towards genomic privacy have almost never targeted specifically this important dignitary component of the privacy interest. In this paper we first articulate the question of a non-consequentialist genomic privacy interest, and then present results of an empirical study that probed people’s attitudes towards that interest. This was done via comparison to other non-consequentialist privacy interests, which are more tangible and can be more easily assessed. Our results indicate that the non-consequentialist genomic privacy interest is rather weak. This insight can assist in adjudicating dilemmas involving genomic privacy.

  • applied and professional ethics
  • confidentiality/privacy
  • genethics
  • human dignity

Data availability statement

Data are available in a public, open access repository.

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Data availability statement

Data are available in a public, open access repository.

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Footnotes

  • Contributors SC was in charge of the theoretical aspects. RZ was in charge of the empirical aspects. Both worked on integrating those two aspects to produce the final version.

  • 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.

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

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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