Genomic Privacy, Identity and Dignity

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Article number1213
JournalJournal of Medical Ethics
DOIs
StateAccepted/In press - 1 Jan 2021

Keywords

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

ASJC Scopus subject areas

  • Health(social science)
  • Issues, ethics and legal aspects
  • Arts and Humanities (miscellaneous)
  • Health Policy

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