The ethics conundrum in Recall by Genotype (RbG) research: Perspectives from birth cohort participants

Abstract

Recall by genotype (RbG) research involves recruiting participants on the basis of genetic variation. The recent use of this approach in the Avon Longitudinal Study of Parents and Children (ALSPAC) has presented an important challenge for ethical conduct: for example, to inform participants of their genetic information and to deviate from existing policies of non-disclosure of results and risk unanticipated harms, or mask the full structure of the study design and miss an opportunity to open a process of disclosure within genotype directed research. Here we report analysis of 53 semi-structured interviews conducted with young adult ALSPAC participants. We found that the deep trust and faith participants developed over their long-term relationship with the study, alongside a naturally limited knowledge of genetics and modest interest in reported research outcomes, meant most reported few immediate concerns about being recruited by genotype. Participants considered themselves part of the ALSPAC team and in this vein identified constructive concerns about being informed of RbG research in recruitment documents as well as what general results would be most valuable and informative. Our findings highlight the importance of solidarity, reciprocity and co-production in biobank/participant relations, especially in long-term birth cohort studies where relationships develop over a lifetime. We argue that strong trusting relationships between study and participant confer great responsibility on researchers regarding duty of care. We make recommendations for conducting RbG research in longitudinal studies beyond those already available in the literature for other study-types.\n\nConflict of InterestThe authors declare no conflict of interest.