The Ethics and Laws of Medical Big Data

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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, at the same time, adequately protect individuals’ privacy. The metaphor that property is a “bundle of sticks”, each representing a different right, 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. We will identify and examine ethical and legal challenges and make suggestions on how to address them. In our discussion of each of the topics, we will also give examples related to the use of medical big data during the COVID-19 pandemic, though the issues we raise extend far beyond it.
Original languageEnglish
Title of host publicationThe Cambridge Handbook of Information Technology, Life Sciences and Human Rights
EditorsMarcello Ienca, Oreste Pollicino, Laura Liguori, Elisa Stefanini, Roberto Andorno
PublisherCambridge University Press
Publication date2022
ISBN (Print)9781108477833
ISBN (Electronic)9781108775038
Publication statusPublished - 2022

    Research areas

  • Faculty of Law - Big data, Ethics, Ownership, COVID-19, Data Sharing, informed consent, EU Law, US Law

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