Abstract
Aim: The return of individual genetic research results has been identified as one of the most pressing ethical challenges warranting immediate policy attention. We explored the practices and perspectives of genome-wide association studies (GWAS) investigators on this topic. Materials & methods: Corresponding authors of published GWAS were invited to participate in a semistructured interview. Interviews (n = 35) were transcribed and analyzed using conventional content analysis. Results: Most investigators had not returned GWAS results. Several had experience returning results in the context of linkage/family studies, and many felt that it will become a larger issue in whole-genome/-exome sequencing. Conclusions: Research context and nature of the study are important considerations in the decision to return results. More nuanced ethical guidelines should take these contextual factors into account.
Original language | English (US) |
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Pages (from-to) | 27-34 |
Number of pages | 8 |
Journal | Personalized Medicine |
Volume | 10 |
Issue number | 1 |
DOIs | |
State | Published - Jan 2013 |
Keywords
- ethics
- genome-wide association
- genomics
- policy
- return of results
- whole-genome sequencing
ASJC Scopus subject areas
- Molecular Medicine
- Pharmacology