Consent in escrow

• Published in: Journal of law and the biosciences Vol. 2; no. 1; pp. 69 - 78
• Main Authors: Van der Loos, Kiah I, Longstaff, Holly, Virani, Alice, Illes, Judy
• Format: Journal Article
• Language: English
• Published: England Oxford University Press 01.02.2015
• Subjects: neuroethics; disaster ethics; informed consent; consent in escrow; disaster research; research ethics
• ISSN: 2053-9711; 2053-9711
• DOI: 10.1093/jlb/lsu031

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.