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Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance

Published online by Cambridge University Press:  01 January 2021

Wylie Burke ,
Laura M. Beskow ,
Susan Brown Trinidad ,
Stephanie M. Fullerton  and
Kathleen Brelsford
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Abstract

Neither the range of potential results from genomic research that might be returned to participants nor future uses of stored data and biospecimens can be fully predicted at the outset of a study. Informed consent procedures require clear explanations about how and by whom decisions are made and what principles and criteria apply. To ensure trustworthy research governance, there is also a need for empirical studies incorporating public input to evaluate and strengthen these processes.

Type
Symposium Articles
Information
Journal of Law, Medicine & Ethics , Volume 46 , Issue 1: The Future of Informed Consent in Research & Translational Medicine: A Century of Law, Ethics & Innovation , Spring 2018 , pp. 79 - 86
Copyright
Copyright © American Society of Law, Medicine and Ethics 2018

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