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Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance

Published online by Cambridge University Press:  01 January 2021


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.

Symposium Articles
Copyright © American Society of Law, Medicine and Ethics 2018

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