Communicating identifiability risks to biobank donors

Research output: Contribution to journal › Journal article › Research › peer-review

Standard

Communicating identifiability risks to biobank donors. / Kasperbauer, T. J.; Gjerris, Mickey; Waldemar, Gunhild; Sandoe, Peter.

In: Cambridge Quarterly of Healthcare Ethics, Vol. 27, No. 1, 2018, p. 123-136.

Research output: Contribution to journal › Journal article › Research › peer-review

Harvard

Kasperbauer, TJ, Gjerris, M, Waldemar, G & Sandoe, P 2018, 'Communicating identifiability risks to biobank donors', Cambridge Quarterly of Healthcare Ethics, vol. 27, no. 1, pp. 123-136. https://doi.org/10.1017/S0963180117000457

APA

Kasperbauer, T. J., Gjerris, M., Waldemar, G., & Sandoe, P. (2018). Communicating identifiability risks to biobank donors. Cambridge Quarterly of Healthcare Ethics, 27(1), 123-136. https://doi.org/10.1017/S0963180117000457

Vancouver

Kasperbauer TJ, Gjerris M, Waldemar G, Sandoe P. Communicating identifiability risks to biobank donors. Cambridge Quarterly of Healthcare Ethics. 2018;27(1):123-136. https://doi.org/10.1017/S0963180117000457

Author

Kasperbauer, T. J. ; Gjerris, Mickey ; Waldemar, Gunhild ; Sandoe, Peter. / Communicating identifiability risks to biobank donors. In: Cambridge Quarterly of Healthcare Ethics. 2018 ; Vol. 27, No. 1. pp. 123-136.

Bibtex

@article{1ff25242c35149fabcebe4c5d40d1119,
title = "Communicating identifiability risks to biobank donors",
abstract = "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.",
author = "Kasperbauer, {T. J.} and Mickey Gjerris and Gunhild Waldemar and Peter Sandoe",
year = "2018",
doi = "10.1017/S0963180117000457",
language = "English",
volume = "27",
pages = "123--136",
journal = "Cambridge Quarterly of Healthcare Ethics",
issn = "0963-1801",
publisher = "Cambridge University Press",
number = "1",

}

RIS

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