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激励捐赠者参与基因研究?重新思考知情同意作用的人类学原因。

Motivating donors to genetic research? Anthropological reasons to rethink the role of informed consent.

作者信息

Hoeyer Klaus, Lynöe Niels

机构信息

Department of Health Services Research, Institute of Public Health, University of Copenhagen, Oester Farimagsgade 5, Building 15, DK-1014, Copenhagen K, Denmark.

出版信息

Med Health Care Philos. 2006;9(1):13-23. doi: 10.1007/s11019-005-5067-1.

DOI:10.1007/s11019-005-5067-1
PMID:16645794
Abstract

In this article we explore the contribution from social anthropology to the medical ethical debates about the use of informed consent in research, based on blood samples and other forms of tissue. The article springs from a project exploring donors' motivation for providing blood and healthcare data for genetic research to be executed by a Swedish start-up genomics company. This article is not confined to empirical findings, however, as we suggest that anthropology provides reason to reassess the theoretical understanding of autonomy as generally defined by Beauchamp and Childress. Careful consideration of the trust expressed by donors through the act of donation, furthermore, suggests that there is reason to redirect the ethical scrutiny from informed consent to issues concerning institutional arrangements and social responsibility. In particular, we suggest that an anthropological approach could facilitate a reconsideration of the political implications of using informed consent as a regulatory practice in tissue-based research.

摘要

在本文中,我们探讨社会人类学对关于在基于血样和其他组织形式的研究中使用知情同意的医学伦理辩论的贡献。本文源自一个项目,该项目探讨捐赠者为一家瑞典初创基因组学公司进行基因研究提供血液和医疗保健数据的动机。然而,本文并不局限于实证研究结果,因为我们认为人类学为重新评估博尚和奇尔德雷斯普遍定义的自主性理论理解提供了理由。此外,仔细考虑捐赠者通过捐赠行为所表达的信任表明,有理由将伦理审查从知情同意转向有关机构安排和社会责任的问题。特别是,我们认为人类学方法有助于重新思考在基于组织的研究中使用知情同意作为一种监管实践的政治影响。

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Motivating donors to genetic research? Anthropological reasons to rethink the role of informed consent.激励捐赠者参与基因研究?重新思考知情同意作用的人类学原因。
Med Health Care Philos. 2006;9(1):13-23. doi: 10.1007/s11019-005-5067-1.
2
'Science is really needed--that's all I know': informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden.“科学是真正必要的——我只知道这一点”:瑞典北部基因研究中的知情同意与非语言采血实践
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Better governance starts with better words: why responsible human tissue research demands a change of language.善政始于善言:为何负责任的人类组织研究需要改变语言。
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Comparative ethnographies of medical research: materiality, social relations, citizenship and hope in Tanzania and Sierra Leone.

本文引用的文献

1
Empty ethics: the problem with informed consent.空洞的伦理:知情同意的问题
Sociol Health Illn. 2003 Nov;25(7):768-92. doi: 10.1046/j.1467-9566.2003.00369.x.
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Conflicting notions of personhood in genetic research.
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The ethics of research using biobanks: reason to question the importance attributed to informed consent.使用生物样本库进行研究的伦理问题:质疑对知情同意所赋予重要性的理由。
Arch Intern Med. 2005 Jan 10;165(1):97-100. doi: 10.1001/archinte.165.1.97.
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Public trust and 'ethics review' as a commodity: the case of Genomics England Limited and the UK's 100,000 genomes project.公众信任与作为商品的“伦理审查”:以英国基因组公司和英国十万人基因组计划为例
Med Health Care Philos. 2018 Jun;21(2):159-168. doi: 10.1007/s11019-017-9810-1.
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Healthcare professionals' and patients' perspectives on consent to clinical genetic testing: moving towards a more relational approach.医疗保健专业人员和患者对临床基因检测同意书的看法:迈向更具关联性的方法。
BMC Med Ethics. 2017 Aug 8;18(1):47. doi: 10.1186/s12910-017-0207-8.
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Sociocultural variation in attitudes toward use of genetic information and participation in genetic research by race in the United States: implications for precision medicine.美国不同种族对基因信息使用和参与基因研究态度的社会文化差异:对精准医学的启示
J Am Med Inform Assoc. 2016 Jul;23(4):782-6. doi: 10.1093/jamia/ocv214. Epub 2016 Mar 16.
7
Between personal and relational privacy: understanding the work of informed consent in cancer genetics in Brazil.在个人隐私与关系隐私之间:理解巴西癌症遗传学中知情同意的工作。
J Community Genet. 2015 Jul;6(3):287-93. doi: 10.1007/s12687-015-0234-4. Epub 2015 May 22.
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Evaluating the consent preferences of UK research volunteers for genetic and clinical studies.评估英国研究志愿者对基因和临床研究的同意偏好。
PLoS One. 2015 Mar 11;10(3):e0118027. doi: 10.1371/journal.pone.0118027. eCollection 2015.
9
Flexible positions, managed hopes: the promissory bioeconomy of a whole genome sequencing cancer study.灵活的立场,可控的期望:一项全基因组测序癌症研究的承诺性生物经济
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10
We're not in it for the money-lay people's moral intuitions on commercial use of 'their' biobank.我们从事这项工作并非为了金钱——外行对“他们的”生物样本库商业用途的道德直觉。
Med Health Care Philos. 2013 May;16(2):151-62. doi: 10.1007/s11019-011-9353-9.
4
Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research.知情同意与生物样本库:一项基于人群的对基因研究组织捐赠态度的研究。
Scand J Public Health. 2004;32(3):224-9. doi: 10.1080/14034940310019506.
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Coding and consent: moral challenges of the database project in Iceland.编码与同意:冰岛数据库项目的道德挑战
Bioethics. 2004;18(1):27-49. doi: 10.1111/j.1467-8519.2004.00377.x.
6
'Science is really needed--that's all I know': informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden.“科学是真正必要的——我只知道这一点”:瑞典北部基因研究中的知情同意与非语言采血实践
New Genet Soc. 2003 Dec;22(3):229-44. doi: 10.1080/1463677032000147199.
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The human tissue bill.人体组织法案。
BMJ. 2004 Mar 6;328(7439):533-4. doi: 10.1136/bmj.328.7439.533.
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An ethical dilemma.一个道德困境。
Nature. 2003 Sep 11;425(6954):123-4. doi: 10.1038/425123a.
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Medicine. Consent from donors for embryo and stem cell research.医学。捐赠者对胚胎和干细胞研究的同意书。
Science. 2003 Aug 15;301(5635):921. doi: 10.1126/science.1087038.
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UK Biobank: a project in search of a protocol?英国生物银行:一个寻求方案的项目?
Lancet. 2003 May 17;361(9370):1734-8. doi: 10.1016/S0140-6736(03)13377-6.