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Genetic information: making a just world strange

Abstract

In an article recently published in this journal, I raised a puzzle about the control of genetic information, suggesting a situation in which it might turn out that we have a duty to remain in ignorance about at least some aspects of our own genome. In this article, I propose a way that would make sense of how the puzzle arises, and offer a way to resolve it and similar puzzles in future: in essence, we would consider genetic information to be something the distribution of which may be more or less just. We would not know in advance what a just distribution would be, though, and in some cases there might still be a justice-based reason to deny a person genetic information about himself. However, others might also have justice-based claims to be able to access that information. This suggests that there is a possible world in which one person is entitled to at least some genetic information about another, while that other person—to whom the information refers—is not, and that this world would be just.

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Notes

  1. For a recent example of arguments along these lines, see Dempsey [7] and Dubbink and Smith [8], each of which supplements an intriguing argument with a good list of the voluminous literature on this topic.

References

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Acknowledgments

My thanks are due to participants at the workshop “Genetic Discrimination—A Many Faceted Challenge,” held at the University of Sheffield in May 2012—particularly to Ben Douglass for pointing me in the direction of the Hoy and Wick paper. Thanks also to an anonymous reader for raising the concern articulated in the penultimate section. I have not been able to address it fully given the space constraints here, but would hope to do so in future. Finally, thanks to Peter Tyldesley for allowing me to dry-run versions of this article on his undergraduate Insurance Law students at Manchester as part of the “Underwriting, Prejudice and Discrimination” session.

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Correspondence to Iain Brassington.

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Brassington, I. Genetic information: making a just world strange. Theor Med Bioeth 35, 231–246 (2014). https://doi.org/10.1007/s11017-014-9292-6

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  • DOI: https://doi.org/10.1007/s11017-014-9292-6

Keywords

  • Genetic information
  • Privacy
  • Insurance
  • Justice