Returning genetic research results: study type matters

Per Med. 2013 Jan;10(1):27-34. doi: 10.2217/pme.12.109.


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.

Keywords: ethics; genome-wide association; genomics; policy; return of results; whole-genome sequencing.