title: Returning findings within longitudinal cohort studies: the 1958 birth cohort as an exemplar.
abstract: Population-based, prospective longitudinal cohort studies are considering the issues surrounding returning findings to individuals as a result of genomic and other medical research studies. While guidance is being developed for clinical settings, the process is less clear for those conducting longitudinal research. This paper discusses work conducted on behalf of The UK Cohort and Longitudinal Study Enhancement Resource programme (CLOSER) to examine consent requirements, process considerations and specific examples of potential findings in the context of the 1958 British Birth cohort. Beyond deciding which findings to return, there are questions of whether re-consent is needed and the possible impact on the study, how the feedback process will be managed, and what resources are needed to support that process. Recommendations are made for actions a cohort study should consider taking when making vital decisions regarding returning findings. Any decisions need to be context-specific, arrived at transparently, communicated clearly, and in the best interests of both the participants and the study.
authors.affiliation: Department of Health Sciences, University of Leicester, Adrian Building, University Road, LE1 7RH Leicester, UK.
authors.forename: Susan E
authors.initials: SE
authors.lastname: Wallace
authors.affiliation: JDRF/Wellcome Trust Diabetes and Inflammation Laboratory, Department of Medical Genetics, NIHR Cambridge Biomedical Research Centre, Cambridge Institute for Medical Research, University of Cambridge, Cambridge, UK.
authors.forename: Neil M
authors.initials: NM
authors.lastname: Walker
authors.affiliation: Director of Cohorts and Longitudinal Studies Enhancement Resources (CLOSER), Centre for Longitudinal Studies, Institute of Education, London, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Elliott
keywords: Ethics; Individual genetic research findings; Longitudinal population cohort; Policy