Communicating identifiability risks to biobank donors
Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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Communicating identifiability risks to biobank donors. / Kasperbauer, T. J.; Gjerris, Mickey; Waldemar, Gunhild; Sandoe, Peter.
I: Cambridge Quarterly of Healthcare Ethics, Bind 27, Nr. 1, 2018, s. 123-136.Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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TY - JOUR
T1 - Communicating identifiability risks to biobank donors
AU - Kasperbauer, T. J.
AU - Gjerris, Mickey
AU - Waldemar, Gunhild
AU - Sandoe, Peter
PY - 2018
Y1 - 2018
N2 - Recent highly publicized privacy breaches in healthcare and genomics research have led many to question whether current standards of data protection are adequate. Improvements in de-identification techniques, combined with pervasive data sharing, have increased the likelihood that external parties can track individuals across multiple databases. This article focuses on the communication of identifiability risks in the process of obtaining consent for donation and research. Most ethical discussions of identifiability risks have focused on the severity of the risk and how it might be mitigated, and what precisely is at stake in pervasive data sharing. However, there has been little discussion of whether and how to communicate the risk to potential donors. We review the ethical arguments behind favoring different types of risk communication in the consent process, and outline how identifiability concerns can be incorporated into either a detailed or a simplified method of communicating risks during the consent process.
AB - Recent highly publicized privacy breaches in healthcare and genomics research have led many to question whether current standards of data protection are adequate. Improvements in de-identification techniques, combined with pervasive data sharing, have increased the likelihood that external parties can track individuals across multiple databases. This article focuses on the communication of identifiability risks in the process of obtaining consent for donation and research. Most ethical discussions of identifiability risks have focused on the severity of the risk and how it might be mitigated, and what precisely is at stake in pervasive data sharing. However, there has been little discussion of whether and how to communicate the risk to potential donors. We review the ethical arguments behind favoring different types of risk communication in the consent process, and outline how identifiability concerns can be incorporated into either a detailed or a simplified method of communicating risks during the consent process.
U2 - 10.1017/S0963180117000457
DO - 10.1017/S0963180117000457
M3 - Journal article
C2 - 29214966
AN - SCOPUS:85038419530
VL - 27
SP - 123
EP - 136
JO - Cambridge Quarterly of Healthcare Ethics
JF - Cambridge Quarterly of Healthcare Ethics
SN - 0963-1801
IS - 1
ER -
ID: 187261564