Returning individual research results in international direct-to-participant genomic research: results from a 31-country study.

ABSTRACT: This paper summarizes the results of a 31-country qualitative study of expert perspectives on the regulation of international "direct-to-participant" (DTP) genomic research. We outline how the practice of directly recruiting participants for genomic studies online complicates ethics and regulatory considerations for the return of individual research results. As part of a larger project supported by the National Human Genome Research Institute, National Institutes of Health, we prepared and distributed to 31 global legal experts a questionnaire intended to ascertain opinions and perspectives on the way international DTP genomic research is likely to be regulated. We found significant disagreement across jurisdictions on the most favorable approach to managing such results, with some countri

SUBMITTER: Lang M 

PROVIDER: S-EPMC9553878 | biostudies-literature | 2022 Oct

REPOSITORIES: biostudies-literature