Nina Varsava et al, Trustworthiness in Untrustworthy Times: Response to Open Peer
Commentaries on Beyond Consent, 18 The Am. J. of Bioethics W6 (2018).
Abstract
In Beyond Consent (Kraft et al. 2018), we argued that institutional trustworthiness will be critical to the success of precision medicine research, particularly insofar as it supports building trust among diverse and historically underrepresented patient populations. In this response to the commentaries on our target article, we expand on the distinction between trust and trustworthiness and examine how these related, but distinct, concepts inform how we think about institutional responsibilities, clinical relationships, systems issues across networked research and the broader US health care system, and the role of informed consent and community engagement in building trustworthiness.
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