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Is it ethical to deny genetic research participants individualised results?
  1. P Affleck
  1. Paul Affleck, Section of Epidemiology and Biostatistics, Leeds Institute of Molecular Medicine, Cancer Genetics Building, St James’s University Hospital, Leeds LS9 7TF, UK; p.a.affleck{at}leeds.ac.uk

Abstract

This article examines a key ethical concern that has arisen in the work of the international research consortium GenoMEL (http://www.genomel.org) and that has relevance to all genetic research in humans. The question is whether it is ethical to deny research participants the opportunity to receive individualised genetic results obtained from the biological samples they provide. Where those results are of clinical importance, a “respect for persons” requirement would make the offering of those results imperative. However, where those results are of uncertain clinical value, the picture is less clear. This paper argues that researchers may not be ethically obliged to offer such results to their participants, because of competing ethical demands.

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Footnotes

  • Competing interests: None.

  • Funding: The author is employed by the coordinator of GenoMEL, the University of Leeds, as a project manager.

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

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