1. Returning genetic research results: study type matters
- Author
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Steven Jofe, Amy L. McGuire, Jill O. Robinson, Rachel B. Ramoni, Sharon E. Plon, and Debra S. Morley
- Subjects
Pharmacology ,business.industry ,Study Type ,Applied psychology ,Research context ,Genome-wide association study ,Context (language use) ,General Medicine ,Bioinformatics ,Article ,Family studies ,Content analysis ,Molecular Medicine ,Medicine ,business ,Return of results ,Genetic association - 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.
- Published
- 2013