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Returning findings within longitudinal cohort studies : the 1958 birth cohort as an exemplar

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journal contribution
posted on 29.08.2014, 14:02 by Susan E. Wallace, Neil M. Walker, Jane Elliott
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.

History

Citation

Emerging Themes in Epidemiology, 2014, 11 : 10

Author affiliation

/Organisation/COLLEGE OF MEDICINE, BIOLOGICAL SCIENCES AND PSYCHOLOGY/School of Medicine/Department of Health Sciences

Version

VoR (Version of Record)

Published in

Emerging Themes in Epidemiology

Publisher

BioMed Central

eissn

1742-7622

Copyright date

2014

Available date

29/08/2014

Publisher version

http://www.ete-online.com/content/11/1/10

Notes

PMCID: PMC4131774

Language

en