The Ethics and Laws of Medical Big Data

in The Cambridge Handbook of Information Technology, Life Sciences and Human Rights (M. Ienca, O. Pollicino, L. Liguori, E. Stefanini & R. Andorno eds., Cambridge University Press, 2022)

Posted: 4 Mar 2021 Last revised: 15 Aug 2022

See all articles by Hrefna D. Gunnarsdottir

Hrefna D. Gunnarsdottir

University of Copenhagen - Centre for Advanced Studies in Biomedical Innovation Law (CeBIL)

I. Glenn Cohen

Harvard Law School

Timo Minssen

University of Copenhagen - Centre for Advanced Studies in Biomedical Innovation Law (CeBIL) - Faculty of Law

Sara Gerke

Pennsylvania State University, Dickinson Law

Date Written: May 17, 2022

Abstract

The COVID-19 pandemic has highlighted that leveraging medical big data can help to better predict and control outbreaks from the outset. However, there are still challenges to overcome in the 21st century to efficiently use medical big data, promote innovation and public health activities and adequately protect individuals’ privacy. The metaphor that property is a “bundle of sticks” applies equally to medical big data. Understanding medical big data in this way raises a number of questions, including: Who has the right to make money off its buying and selling, or is it inalienable? When does medical big data become sufficiently stripped of identifiers that the rights of an individual concerning the data disappear? How have different regimes such as the General Data Protection Regulation in Europe and the Health Insurance Portability and Accountability Act in the US answered these questions differently? In this chapter, we will discuss three topics: (1) privacy and data sharing, (2) informed consent, and (3) ownership.

Keywords: Big Data, Medicine, Ethics, Ownership, Informed Consent, Privacy, Data Sharing, COVID-19, EU Law, US Law

JEL Classification: I1, K

Suggested Citation

Gunnarsdottir, Hrefna D. and Cohen, I. Glenn and Minssen, Timo and Gerke, Sara, The Ethics and Laws of Medical Big Data (May 17, 2022). in The Cambridge Handbook of Information Technology, Life Sciences and Human Rights (M. Ienca, O. Pollicino, L. Liguori, E. Stefanini & R. Andorno eds., Cambridge University Press, 2022), Available at SSRN: https://ssrn.com/abstract=3795470

Hrefna D. Gunnarsdottir

University of Copenhagen - Centre for Advanced Studies in Biomedical Innovation Law (CeBIL)

Karen Blixens Plads 16
Copenhagen S, 2300
Denmark

I. Glenn Cohen

Harvard Law School ( email )

1525 Massachusetts Avenue
Griswold Hall 503
Cambridge, 02138
United States

Timo Minssen

University of Copenhagen - Centre for Advanced Studies in Biomedical Innovation Law (CeBIL) - Faculty of Law ( email )

Karen Blixens Plads 16
Copenhagen, 2300
Denmark
+46 708 607517 (Phone)

HOME PAGE: http://jura.ku.dk/cebil/staff/profile/?pure=en/persons/381631

Sara Gerke (Contact Author)

Pennsylvania State University, Dickinson Law ( email )

150 S College St
Carlisle, PA 17013
United States

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