The collection, linking and use of data in biomedical research and health care: ethical issues

Martin Richards; Ross Anderson; Stephen Hinde; Jane Kaye; Anneke Lucassen; Paul M Matthews; Michael Parker; Margaret V Shotter; Geoff Watts; Susan E Wallace; John Wise

The collection, linking and use of data in biomedical research and health care: ethical issues

Martin Richards, Ross Anderson, Stephen Hinde, Jane Kaye, Anneke Lucassen, Paul M Matthews, Michael Parker, Margaret V Shotter, Geoff Watts, Susan E Wallace, John Wise

Research output: Book/Report › Commissioned report

Abstract / Description of output

We are generating more data about people’s health and biology than ever before. Combined with advances in IT and data science, this offers significant opportunities to generate new knowledge and improve medical practice; but it also raises concerns about individuals’ privacy.
his report looks at the ethical issues raised by data use in biomedical research and health care. It sets out key ethical principles for the design and governance of data initiatives, and identifies examples of good practice relevant to anyone approaching a data initiative.
The report calls for greater transparency about how people’s data are used, and recommends the introduction of criminal penalties in the UK for the misuse of data.

Original language	English
Publisher	Nuffield Council on Bioethics
Number of pages	225
Publication status	Published - 3 Feb 2015

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The Collection Linking_RICHARDS_VOR_ReportFinal published version, 1.94 MBLicence: All Rights Reserved

https://www.nuffieldbioethics.org/publications/biological-and-health-dataLicence: All Rights Reserved

Cite this

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title = "The collection, linking and use of data in biomedical research and health care: ethical issues",

abstract = "We are generating more data about people{\textquoteright}s health and biology than ever before. Combined with advances in IT and data science, this offers significant opportunities to generate new knowledge and improve medical practice; but it also raises concerns about individuals{\textquoteright} privacy. his report looks at the ethical issues raised by data use in biomedical research and health care. It sets out key ethical principles for the design and governance of data initiatives, and identifies examples of good practice relevant to anyone approaching a data initiative.The report calls for greater transparency about how people{\textquoteright}s data are used, and recommends the introduction of criminal penalties in the UK for the misuse of data.",

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AU - Richards, Martin

AU - Anderson, Ross

AU - Hinde, Stephen

AU - Kaye, Jane

AU - Lucassen, Anneke

AU - Matthews, Paul M

AU - Parker, Michael

AU - Shotter, Margaret V

AU - Watts, Geoff

AU - Wallace, Susan E

AU - Wise, John

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AB - We are generating more data about people’s health and biology than ever before. Combined with advances in IT and data science, this offers significant opportunities to generate new knowledge and improve medical practice; but it also raises concerns about individuals’ privacy. his report looks at the ethical issues raised by data use in biomedical research and health care. It sets out key ethical principles for the design and governance of data initiatives, and identifies examples of good practice relevant to anyone approaching a data initiative.The report calls for greater transparency about how people’s data are used, and recommends the introduction of criminal penalties in the UK for the misuse of data.

M3 - Commissioned report

BT - The collection, linking and use of data in biomedical research and health care: ethical issues

PB - Nuffield Council on Bioethics

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The collection, linking and use of data in biomedical research and health care: ethical issues

Abstract / Description of output

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