Oxford Internet Institute, University of Oxford, 1 St Giles, Oxford, OX1 3JS, UK.
The Alan Turing Institute, 96 Euston Road, London, NW1 2DB, UK.
Sci Eng Ethics. 2019 Oct;25(5):1357-1387. doi: 10.1007/s11948-018-0067-8. Epub 2018 Oct 24.
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.
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。
Sci Eng Ethics. 2016-4
Acta Med Port. 2019-5-31
Rev Soc Bras Med Trop. 2005
Seishin Shinkeigaku Zasshi. 2002
Bull World Health Organ. 2021-2-1
Yearb Med Inform. 2020-8
Philos Trans A Math Phys Eng Sci. 2018-10-15
Life Sci Soc Policy. 2017-8-21
PLoS One. 2017-5-9
Philos Trans A Math Phys Eng Sci. 2016-12-28
Philos Trans A Math Phys Eng Sci. 2016-12-28
Int J Med Inform. 2017-1
J Am Med Inform Assoc. 2016-11
Lancet. 2015-7-25