The Ethics and Laws of Medical Big Data
Publikation: Bidrag til bog/antologi/rapport › Bidrag til bog/antologi › Forskning › fagfællebedømt
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The Ethics and Laws of Medical Big Data. / Gunnarsdóttir, Hrefna Dögg; Cohen, Glenn ; Minssen, Timo; Gerke, Sara.
The Cambridge Handbook of Information Technology, Life Sciences and Human Rights. red. / Marcello Ienca; Oreste Pollicino; Laura Liguori; Elisa Stefanini; Roberto Andorno. Cambridge University Press, 2022. s. 48-55.Publikation: Bidrag til bog/antologi/rapport › Bidrag til bog/antologi › Forskning › fagfællebedømt
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TY - CHAP
T1 - The Ethics and Laws of Medical Big Data
AU - Gunnarsdóttir, Hrefna Dögg
AU - Cohen, Glenn
AU - Minssen, Timo
AU - Gerke, Sara
PY - 2022
Y1 - 2022
N2 - 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.
AB - 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.
KW - Faculty of Law
KW - Big data
KW - Ethics
KW - Ownership
KW - COVID-19
KW - Data Sharing
KW - informed consent
KW - EU Law
KW - US Law
UR - https://www.cambridge.org/core/books/cambridge-handbook-of-information-technology-life-sciences-and-human-rights/FC8CBED0E5364ED33239AE9650B5356E#fndtn-metrics
UR - https://www.cambridge.org/se/academic/subjects/law/human-rights/cambridge-handbook-information-technology-life-sciences-and-human-rights?format=HB&isbn=9781108477833#contentsTabAnchor
U2 - 10.1017/9781108775038.006
DO - 10.1017/9781108775038.006
M3 - Book chapter
SN - 9781108477833
SP - 48
EP - 55
BT - The Cambridge Handbook of Information Technology, Life Sciences and Human Rights
A2 - Ienca, Marcello
A2 - Pollicino, Oreste
A2 - Liguori, Laura
A2 - Stefanini, Elisa
A2 - Andorno, Roberto
PB - Cambridge University Press
ER -
ID: 245426353