Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

ABSTRACT: Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders' perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them. The systematic searches were conducted across five major databases in August 2018 and repeated in April 2020, and included studies reporting findings from primary research regardless of method (quantitative, qualitative, mixed). Articles that related to the clinical setting were excluded. Our search identified 221 articles that met

SUBMITTER: Vears DF 

PROVIDER: S-EPMC8575249 | biostudies-literature | 2021

REPOSITORIES: biostudies-literature