The Ethics and Laws of Medical Big Data (under review)

Research output: Chapter in Book/Report/Conference proceedingBook chapterResearchpeer-review

Standard

The Ethics and Laws of Medical Big Data (under review). / Gunnarsdóttir, Hrefna Dögg; Cohen, Glenn ; Minssen, Timo; Gerke, Sara.

The Cambridge Handbook of Life Science, Information Technology and Human Rights. Cambridge University Press, 2020.

Research output: Chapter in Book/Report/Conference proceedingBook chapterResearchpeer-review

Harvard

Gunnarsdóttir, HD, Cohen, G, Minssen, T & Gerke, S 2020, The Ethics and Laws of Medical Big Data (under review). in The Cambridge Handbook of Life Science, Information Technology and Human Rights. Cambridge University Press.

APA

Gunnarsdóttir, H. D., Cohen, G., Minssen, T., & Gerke, S. (2020). The Ethics and Laws of Medical Big Data (under review). Manuscript submitted for publication. In The Cambridge Handbook of Life Science, Information Technology and Human Rights Cambridge University Press.

Vancouver

Gunnarsdóttir HD, Cohen G, Minssen T, Gerke S. The Ethics and Laws of Medical Big Data (under review). In The Cambridge Handbook of Life Science, Information Technology and Human Rights. Cambridge University Press. 2020

Author

Gunnarsdóttir, Hrefna Dögg ; Cohen, Glenn ; Minssen, Timo ; Gerke, Sara. / The Ethics and Laws of Medical Big Data (under review). The Cambridge Handbook of Life Science, Information Technology and Human Rights. Cambridge University Press, 2020.

Bibtex

@inbook{2cff940b2be34f459e6ed75c5b351f4c,
title = "The Ethics and Laws of Medical Big Data (under review)",
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, 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.",
keywords = "Faculty of Law, Big data, Ethics, Ownership, COVID-19, Data Sharing, informed consent, EU Law, US Law",
author = "Gunnarsd{\'o}ttir, {Hrefna D{\"o}gg} and Glenn Cohen and Timo Minssen and Sara Gerke",
year = "2020",
month = "7",
day = "31",
language = "English",
booktitle = "The Cambridge Handbook of Life Science, Information Technology and Human Rights",
publisher = "Cambridge University Press",
address = "United Kingdom",

}

RIS

TY - CHAP

T1 - The Ethics and Laws of Medical Big Data (under review)

AU - Gunnarsdóttir, Hrefna Dögg

AU - Cohen, Glenn

AU - Minssen, Timo

AU - Gerke, Sara

PY - 2020/7/31

Y1 - 2020/7/31

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

M3 - Book chapter

BT - The Cambridge Handbook of Life Science, Information Technology and Human Rights

PB - Cambridge University Press

ER -

ID: 245426353