Work

Returning Genetic Research Results: Study Type Matters

Year: 2012

Type: article

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.

Source: Personalized Medicine

DOI: 10.2217/pme.12.109

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

Institutions: Baylor College of Medicine, Harvard University, Dana-Farber Cancer Institute, Boston Children's Hospital

Language: English

Topic: Ethics in Clinical Research

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

Open Access status: green

Funders: National Human Genome Research Institute, National Institute of Dental and Craniofacial Research

Awards: Evaluating utility and improving implementation of genomic sequencing for pediatric cancer patients in the diverse population and healthcare settings of Texas: The KidsCanSeq Study, Multigenic Dissection of Nonsyndromic Oral Clefts