How to communicate and what to disclose to participants in a recall-by-genotype research approach: a multistep empirical study.

ABSTRACT: Recall-by-genotype (RbG) is a bottom-up approach using existing genetic data to design follow-up stratified studies. Genetic information may be partially disclosed at invitation, thus raising ethical issues which call for defined best practices for disclosure and communication in RbG approaches. Within the context of the ProtectMove sub-project of the Cooperative Health Research in South Tyrol (CHRIS) study, we investigated research participant perspectives on RbG communication strategies (Step 1 and 4, questionnaire with a subsample of CHRIS participants with and without previous experience of RbG, respectively). Additionally, we explored researchers' and study personnel's experience with RbG (Step 2 and 3, focus group discussion). In step 1 (N = 95), participants were generally satisfied

SUBMITTER: Tschigg K 

PROVIDER: S-EPMC11645387 | biostudies-literature | 2024 Dec

REPOSITORIES: biostudies-literature