Returning genetic research results: Study type matters

Amy L. McGuire, Jill Oliver Robinson, Rachel B. Ramoni, Debra S. Morley, Steven Joffe, Sharon E. Plon

Research output: Contribution to journalArticle

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 languageEnglish (US)
Pages (from-to)27-34
Number of pages8
JournalPersonalized Medicine
Volume10
Issue number1
DOIs
StatePublished - Jan 2013

Keywords

  • ethics
  • genome-wide association
  • genomics
  • policy
  • return of results
  • whole-genome sequencing

ASJC Scopus subject areas

  • Molecular Medicine
  • Pharmacology

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    McGuire, A. L., Robinson, J. O., Ramoni, R. B., Morley, D. S., Joffe, S., & Plon, S. E. (2013). Returning genetic research results: Study type matters. Personalized Medicine, 10(1), 27-34. https://doi.org/10.2217/pme.12.109