title: Consent in escrow.
abstract: 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.
authors: Department of Political Science, International Relations Program, The University of British Columbia, Vancouver, BC V6T 1Z4, Canada.
authors: Kiah I
authors: KI
authors: Van der Loos
authors: National Core for Neuroethics, Division of Neurology, Department of Medicine, The University of British Columbia and Engage Associates, Vancouver, BC V5Z 1M9, Canada.
authors: Holly
authors: H
authors: Longstaff
authors: Department of Medical Genetics, Faculty of Medicine, The University of British Columbia, Vancouver, BC V6T 1Z3, Canada.
authors: Alice
authors: A
authors: Virani
authors: National Core for Neuroethics, Division of Neurology, Department of Medicine, 2211 Wesbrook Mall, Vancouver, University of British Columbia, BC V6T 1Z4, Canada.
authors: Judy
authors: J
authors: Illes
keywords: consent in escrow; disaster ethics; disaster research; informed consent; neuroethics; research ethics