If you build it, they will come: unintended future uses of organised health data collections

BMC Medical Ethics

Review

Heidi Beate Bentzen¹  Wylie Burke²  Jeffery Yen³  Emily Christofides³  Kieran C. O’Doherty³  Nina Hallowell⁴  Donald J. Willison⁵  Barbara A. Koenig⁶ 

[1] Centre for Medical Ethics, Faculty of Medicine, University of Oslo, Oslo, Norway;Norwegian Research Center for Computers and Law, Faculty of Law, University of Oslo, Oslo, Norway;Norwegian Cancer Genomics Consortium, Oslo, Norway;Department of Bioethics & Humanities, University of Washington, Seattle, USA;Department of Psychology, University of Guelph, N1G 2W1, Guelph, ON, Canada;Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK;Institute of Health Policy Management and Evaluation

[2]  Joint Centre for Bioethics, University of Toronto, Toronto, Canada;Department of Clinical Epidemiology and Biostatistics, Faculty of Health Sciences, McMaster University, Hamilton, Canada;UCSF Bioethics, Institute for Health & Aging, University of California, San Francisco, USA;

关键词: Health data;    Privacy;    Secondary uses;    Discrimination;    Health research;    Biobanks;    Data sharing;    DNA;   

DOI  :  10.1186/s12910-016-0137-x

 received in 2015-12-18, accepted in 2016-08-25,  发布年份 2016

来源: Springer

【 摘 要 】

BackgroundHealth research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include:Population biobanks, cohort studies, and genome databasesClinical and public health dataDirect-to-consumer genetic testingSocial mediaFitness trackers, health apps, and biometric data sensorsEthical, legal, and social challenges of such collections are well recognized, but there has been limited attention to the broader societal implications of the existence of these collections.DiscussionAlthough health research conducted using these collections is broadly recognized as beneficent, secondary uses of these data and samples may be controversial. We examine both documented and hypothetical scenarios of secondary uses of health data and samples. In particular, we focus on the use of health data for purposes of:Forensic investigationsCivil lawsuitsIdentification of victims of mass casualty eventsDenial of entry for border security and immigrationMaking health resource rationing decisionsFacilitating human rights abuses in autocratic regimesConclusionsCurrent safeguards relating to the use of health data and samples include research ethics oversight and privacy laws. These safeguards have a strong focus on informed consent and anonymization, which are aimed at the protection of the individual research subject. They are not intended to address broader societal implications of health data and sample collections. As such, existing arrangements are insufficient to protect against subversion of health databases for non-sanctioned secondary uses, or to provide guidance for reasonable but controversial secondary uses. We are concerned that existing debate in the scholarly literature and beyond has not sufficiently recognized the secondary data uses we outline in this paper. Our main purpose, therefore, is to raise awareness of the potential for unforeseen and unintended consequences, in particular negative consequences, of the increased availability and development of health data collections for research, by providing a comprehensive review of documented and hypothetical non-health research uses of such data.

【 授权许可】

CC BY   
© The Author(s). 2016