Journal Article

Consent in escrow

Kiah I. Van der Loos, Holly Longstaff, Alice Virani and Judy Illes

in Journal of Law and the Biosciences

Published on behalf of Harvard University Law School

Volume 2, issue 1, pages 69-78
Published in print February 2015 |
Published online December 2014 | e-ISSN: 2053-9711 | DOI: https://dx.doi.org/10.1093/jlb/lsu031

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Disasters such as flash flooding, mass shootings, and train and airplane accidents involving large numbers of victims produce significant opportunity for research in the biosciences. This opportunity exists in the extreme tails of life events, however, during which decisions about life and death, valuing and foregoing, speed and patience, trust and distrust, are tested simultaneously and abundantly. The press and urgency of these scenarios may also challenge the ability of researchers to comprehensively deliver information about the purposes of a study, risks, benefits, and alternatives. Under these circumstances, we argue that acquiring consent for the immediate use of data that are not time sensitive represents a gap in the protection of human study participants. In response, we offer a two-tiered model of consent that allows for data collected in real-time to be held in escrow until the acute post-disaster window has closed. Such a model not only respects the fundamental tenet of consent in research, but also enables such research to take place in an ethically defensible manner.

Keywords: informed consent; disaster research; disaster ethics; research ethics; consent in escrow; neuroethics

Journal Article.  3950 words.  Illustrated.

Subjects: Medical and Healthcare Law ; Bioethics

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