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Updated: Jun 24, 2026

Targeted Next-generation Sequencing and Bioinformatics Pipeline to Evaluate Genetic Determinants of Constitutional Disease
Published on: April 4, 2018
Is it ethical to deny genetic research participants individualised results?
1Leeds Institute of Molecular Medicine, St James's University Hospital, UK. p.a.affleck@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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