What Should We Be Asking of Informed Consent?

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E. Bromley et al., “From ‘Informed’ to ‘Engaged’ Consent: Risks and Obligations in Consent for Participation in a Health Data Repository,” Journal of Law, Medicine & Ethics 48, no. 1 (2020): 172-182.

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“NIH Data Sharing Policies,” 2019, available at <https://www.nlm.nih.gov/NIHbmic/nih_data_sharing_policies.html> (last visited February 11, 2020).

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45 CFR 46 Part A (2019); E. W. Clayton and B.A. Malin , “Assessing Risks to Privacy in Biospecimen Research,” in B.A. Bierer , H.F. Lynch , I. Glenn Cohen , and S.M. Rivera , eds., Specimen Science: Ethical and Policy Implications (Boston: MIT Press, 2017) 143-158.

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45 CFR § 46.111(a)(2)(2019).