Cargando…

Consent in escrow

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, va...

Descripción completa

Detalles Bibliográficos
Autores principales: Van der Loos, Kiah I., Longstaff, Holly, Virani, Alice, Illes, Judy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5033562/
https://www.ncbi.nlm.nih.gov/pubmed/27774181
http://dx.doi.org/10.1093/jlb/lsu031
_version_ 1782455169464664064
author Van der Loos, Kiah I.
Longstaff, Holly
Virani, Alice
Illes, Judy
author_facet Van der Loos, Kiah I.
Longstaff, Holly
Virani, Alice
Illes, Judy
author_sort Van der Loos, Kiah I.
collection PubMed
description 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.
format Online
Article
Text
id pubmed-5033562
institution National Center for Biotechnology Information
language English
publishDate 2014
publisher Oxford University Press
record_format MEDLINE/PubMed
spelling pubmed-50335622016-10-21 Consent in escrow Van der Loos, Kiah I. Longstaff, Holly Virani, Alice Illes, Judy J Law Biosci Essay 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. Oxford University Press 2014-12-16 /pmc/articles/PMC5033562/ /pubmed/27774181 http://dx.doi.org/10.1093/jlb/lsu031 Text en © The Author 2014. Published by Duke University School of Law, Harvard Law School, Oxford University Press, and Stanford Law School. http://creativecommons.org/licenses/by-nc-nd/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs licence (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial reproduction and distribution of the work, in any medium, provided the original work is not altered or transformed in any way, and that the work is properly cited. For commercial re-use, please contact journals.permissions@oup.com
spellingShingle Essay
Van der Loos, Kiah I.
Longstaff, Holly
Virani, Alice
Illes, Judy
Consent in escrow
title Consent in escrow
title_full Consent in escrow
title_fullStr Consent in escrow
title_full_unstemmed Consent in escrow
title_short Consent in escrow
title_sort consent in escrow
topic Essay
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5033562/
https://www.ncbi.nlm.nih.gov/pubmed/27774181
http://dx.doi.org/10.1093/jlb/lsu031
work_keys_str_mv AT vanderlooskiahi consentinescrow
AT longstaffholly consentinescrow
AT viranialice consentinescrow
AT illesjudy consentinescrow