Communicating Identifiability Risks to Biobank Donors

Cambridge Quarterly of Healthcare Ethics 27 (1):123-136 (2018)
  Copy   BIBTEX

Abstract

Recent highly publicized privacy breaches in health care 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 paper 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 simplified method of communicating risks during the consent process.

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 94,549

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Research, Digital Health Information and Promises of Privacy: Revisiting the Issue of Consent.Timothy Caulfield, Blake Murdoch & Ubaka Ogbogu - 2020 - Canadian Journal of Bioethics / Revue canadienne de bioéthique 3 (1):164-171.
Challenges of web-based personal genomic data sharing.Pascal Borry & Mahsa Shabani - 2015 - Life Sciences, Society and Policy 11 (1):1-13.
Can informed consent to research be adapted to risk?Danielle Bromwich & Annette Rid - 2015 - Journal of Medical Ethics 41 (7):521-528.

Analytics

Added to PP
2019-04-18

Downloads
38 (#416,343)

6 months
10 (#397,263)

Historical graph of downloads
How can I increase my downloads?

Author Profiles

Peter Sandøe
University of Copenhagen
T. J. Kasperbauer
Indiana University