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实现死后医学数据捐赠:呼吁合理利用个人健康数据。

Enabling Posthumous Medical Data Donation: An Appeal for the Ethical Utilisation of Personal Health Data.

机构信息

Oxford Internet Institute, University of Oxford, 1 St Giles, Oxford, OX1 3JS, UK.

The Alan Turing Institute, 96 Euston Road, London, NW1 2DB, UK.

出版信息

Sci Eng Ethics. 2019 Oct;25(5):1357-1387. doi: 10.1007/s11948-018-0067-8. Epub 2018 Oct 24.


DOI:10.1007/s11948-018-0067-8
PMID:30357557
Abstract

This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster posthumous medical data donation. Two major risks are also identified-harm to others, and lack of control over the use of data-which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to secure informed consent is rejected, and instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks, and offers five foundational principles for ethical medical data donation suggested as a draft code.

摘要

本文认为,应该允许并鼓励个人在去世后捐献其医疗记录,以将个人医疗数据用于科学研究,就像他们已经可以捐献器官或遗体一样。这项研究是牛津大学互联网研究所数字伦理实验室开发的死后医疗数据捐献项目的一部分。本文提出了十个论据来支持促进死后医疗数据捐献的必要性。同时,本文还确定了两个主要风险——对他人的伤害和对数据使用缺乏控制——这可能源于对医疗数据的不受监管的捐献。本文拒绝了记录为基础的医学研究无须获得知情同意即可进行的观点,而主张对使用个人医疗数据应采取自愿和参与式的方法。分析最后强调需要制定数据捐献的道德准则以最小化风险,并提供了五条建议作为道德医疗数据捐献准则草案的基本原则。

相似文献

[1]
Enabling Posthumous Medical Data Donation: An Appeal for the Ethical Utilisation of Personal Health Data.

Sci Eng Ethics. 2018-10-24

[2]
Enabling Posthumous Medical Data Donation: A Plea for the Ethical Utilisation of Personal Health Data

2019

[3]
An Ethical Code for Posthumous Medical Data Donation

2019

[4]
The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts.

Sci Eng Ethics. 2016-4

[5]
[Use of Electronic Medical Records for Research: New Ethical Challenges and Possible Solutions].

Acta Med Port. 2019-5-31

[6]
Posthumous Medical Data Donation: The Case for a Legal Framework

2019

[7]
Informed consent: its importance for retrolective research and medical science progress.

Gac Med Mex. 2021

[8]
[Ethics and medical research: principles, guidelines, and regulations].

Rev Soc Bras Med Trop. 2005

[9]
[Recent topics on ethical issues in psychiatry, mental care and welfare].

Seishin Shinkeigaku Zasshi. 2002

[10]
Ethical Medical Data Donation: A Pressing Issue

2019

引用本文的文献

[1]
Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.

Sci Eng Ethics. 2022-8-3

[2]
Present value of future health data: ethics of data collection and use.

Bull World Health Organ. 2021-2-1

[3]
Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany.

Eur J Hum Genet. 2021-3

[4]
Special Section on Ethics in Health Informatics.

Yearb Med Inform. 2020-8

[5]
Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review.

Eur J Hum Genet. 2020-4

本文引用的文献

[1]
Soft ethics, the governance of the digital and the General Data Protection Regulation.

Philos Trans A Math Phys Eng Sci. 2018-10-15

[2]
Are disruptive innovators in GP provision strengthening or weakening the NHS?

BMJ. 2017-11-29

[3]
Ethical sharing of health data in online platforms - which values should be considered?

Life Sci Soc Policy. 2017-8-21

[4]
Open sharing of genomic data: Who does it and why?

PLoS One. 2017-5-9

[5]
Facilitating the ethical use of health data for the benefit of society: electronic health records, consent and the duty of easy rescue.

Philos Trans A Math Phys Eng Sci. 2016-12-28

[6]
Data philanthropy and the design of the infraethics for information societies.

Philos Trans A Math Phys Eng Sci. 2016-12-28

[7]
The other side of the coin: Harm due to the non-use of health-related data.

Int J Med Inform. 2017-1

[8]
Public preferences for electronic health data storage, access, and sharing - evidence from a pan-European survey.

J Am Med Inform Assoc. 2016-11

[9]
Data donation after death: A proposal to prevent the waste of medical research data.

EMBO Rep. 2016-1

[10]
Data donation after death.

Lancet. 2015-7-25

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