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Privacy in the age of medical big data

Abstract

Big data has become the ubiquitous watch word of medical innovation. The rapid development of machine-learning techniques and artificial intelligence in particular has promised to revolutionize medical practice from the allocation of resources to the diagnosis of complex diseases. But with big data comes big risks and challenges, among them significant questions about patient privacy. Here, we outline the legal and ethical challenges big data brings to patient privacy. We discuss, among other topics, how best to conceive of health privacy; the importance of equity, consent, and patient governance in data collection; discrimination in data uses; and how to handle data breaches. We close by sketching possible ways forward for the regulatory system.

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Acknowledgements

The authors extend thanks to N. Terry and K. Spector-Bagdady.

Author information

Competing interests

W.N.P. and I.G.C.’s research reported in this publication was done with the support of CeBIL (Collaborative Research Program for Biomedical Innovation Law). CeBIL is a scientifically independent collaborative research program supported by a Novo Nordisk Foundation Grant (grant number NNF17SA0027784). W.N.P.’s work was also supported by the National Cancer Institute (Grant number 1-R01-CA-214829-01-A1; The Lifecycle of Health Data: Policies and Practices). I.G.C. has served as a consultant for Otsuka Pharmaceuticals on their Abilify MyCite product.

Correspondence to I. Glenn Cohen.

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Fig. 1: Consent models for health data.
Fig. 2: The data that is and isn’t included in HIPAA.
Fig. 3: Potential harms to the individual if data is breached.