The ethics conundrum in Recall by genotype (RbG) research : perspectives from birth cohort participants

Minion, J. T., Butcher, F., Timpson, N. and Murtagh, M. (2018) The ethics conundrum in Recall by genotype (RbG) research : perspectives from birth cohort participants. PLoS ONE, 13(8), e0202502. (doi: 10.1371/journal.pone.0202502) (PMID:30114272) (PMCID:PMC6095592)

Abstract

Purpose: Recall by genotype (RbG) research recruits on the basis of genetic variation. Increased use of this approach presents an ethical conundrum for cohort studies/biobanks: whether to inform individuals of their genetic information and deviate from standard practice of non-disclosure of results, or mask this information at the level of the individual participant. This paper examines the perspectives of research study participants on RbG research. Methods: Fifty-three semi-structured interviews were conducted with young adult participants of the Avon Longitudinal Study of Parents and Children (ALSPAC). Topics included understandings of RbG research, expectations around recruitment and communication of research findings. Results: Participants uniformly expressed a deep trust and faith in ALSPAC and considered themselves part of the ALSPAC team. Such perspectives, alongside a limited knowledge of genetics and modest interest in reported research outcomes, meant few participants reported immediate concerns about being recruited by genotype. Conclusion: Our findings highlight the responsibility and duty of care on RbG researchers, and longitudinal studies more generally, and the importance of solidarity, reciprocity and co-production in study-participant relations. As such, we consider existing recommendations for conducting RbG research in longitudinal studies in light of our results and speak to recent changes in the approach used by ALSPAC.

• Item Type: Articles
• Additional Information: Funding: The UK Medical Research Council (Grant ref: 102215/2/13/2) and Wellcome Trust (Grant ref: 102215/2/13/2) and the University of Bristol provide core support for ALSPAC. This research was specifically supported by the UK Medical Research Council, MRC Integrative Epidemiology Unit at the University of Bristol (MC_UU_12013/3).
• Status: Published
• Refereed: Yes
• Glasgow Author(s) Enlighten ID: Murtagh, Professor Madeleine

Creator Roles

Murtagh, M.: Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Resources, Supervision, Validation, Writing – original draft, Writing – review and editing

• Authors: Minion, J. T., Butcher, F., Timpson, N., and Murtagh, M.
• College/School: College of Social Sciences
• Journal Name: PLoS ONE
• Publisher: Public Library of Science
• ISSN: 1932-6203
• ISSN (Online): 1932-6203
• Copyright Holders: Copyright © 2016 Minion et al.
• First Published: First published in PLoS ONE 13(8):e0202502
• Publisher Policy: Reproduced under a Creative Commons licence