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本文引用的文献

1
It's arrived! Relational Autonomy Comes to Court: ABC v ST George's Healthcare NHS Trust [2017] EWCA 336.它来了!关系自主性进入法庭:ABC诉圣乔治医疗保健国民保健服务信托基金案[2017]英国上诉法院336号判决
Med Law Rev. 2018 Feb 1;26(1):125-133. doi: 10.1093/medlaw/fwx044.
2
Using and Disclosing Confidential Patient Information and The English Common Law: What are the Information Requirements of a Valid Consent?使用和披露患者保密信息与英国普通法:有效同意的信息要求有哪些?
Med Law Rev. 2018 Feb 1;26(1):51-72. doi: 10.1093/medlaw/fwx038.
3
Exploring the potential duty of care in clinical genomics under UK law.探索英国法律下临床基因组学中潜在的注意义务。
Med Law Int. 2017 Sep;17(3):158-182. doi: 10.1177/0968533217721966. Epub 2017 Aug 14.
4
Approaching confidentiality at a familial level in genomic medicine: a focus group study with healthcare professionals.在基因组医学中探讨家庭层面的隐私保密问题:一项针对医疗保健专业人员的焦点小组研究。
BMJ Open. 2017 Feb 3;7(2):e012443. doi: 10.1136/bmjopen-2016-012443.
5
Montgomery on informed consent: an inexpert decision?蒙哥马利论知情同意:一个非专业的决定?
J Med Ethics. 2016 Feb;42(2):89-94. doi: 10.1136/medethics-2015-102862.
6
'Is this knowledge mine and nobody else's? I don't feel that.' Patient views about consent, confidentiality and information-sharing in genetic medicine.“这些知识是我的,别人都没有吗?我不这么觉得。”患者对基因医学中知情同意、保密和信息共享的看法。
J Med Ethics. 2016 Mar;42(3):174-9. doi: 10.1136/medethics-2015-102781. Epub 2016 Jan 7.
7
Attitudes towards the sharing of genetic information with at-risk relatives: results of a quantitative survey.对与高危亲属分享基因信息的态度:一项定量调查结果
Hum Genet. 2016 Jan;135(1):109-20. doi: 10.1007/s00439-015-1612-z. Epub 2015 Nov 26.
8
DOCTORS' LIABILITY TO THE PATIENT'S RELATIVES IN GENETIC MEDICINE: ABC V St George's Healthcare NHS trust[2015] EWHC 1394 (QB).医生在基因医学中对患者亲属的责任:ABC诉圣乔治医疗保健国民保健服务信托基金案[2015] EWHC 1394 (QB)
Med Law Rev. 2016 Winter;24(1):112-23. doi: 10.1093/medlaw/fwv037. Epub 2015 Oct 3.
9
Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research.医疗保健专业人员在基因医学中对患者亲属的责任:实证研究的系统评价与综合分析
Genet Med. 2016 Apr;18(4):290-301. doi: 10.1038/gim.2015.72. Epub 2015 Jun 25.
10
Disclosing Genetic Information to Family Members About Inherited Cardiac Arrhythmias: An Obligation or a Choice?向家庭成员披露遗传性心律失常的基因信息:是一项义务还是一种选择?
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对不披露家族遗传风险的合理隐私期望:期望什么才合理?

Reasonable expectations of privacy in non-disclosure of familial genetic risk: What is it reasonable to expect?

作者信息

Chico Victoria

机构信息

Society and Ethics Research Group, Connecting Science, Wellcome Genome Campus, Cambridge, UK.

出版信息

Eur J Med Genet. 2019 May;62(5):308-315. doi: 10.1016/j.ejmg.2018.11.013. Epub 2018 Dec 4.

DOI:10.1016/j.ejmg.2018.11.013
PMID:30521983
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6588831/
Abstract

Where there is conflict between a patient's interests in non-disclosure of their genetic information to relatives and the relative's interest in knowing the information because it indicates their genetic risk, clinicians have customarily been able to protect themselves against legal action by maintaining confidence even if, professionally, they did not consider this to be the right thing to do. In ABC v St Georges Healthcare NHS Trust ([2017] EWCA Civ 336) the healthcare team recorded their concern about the wisdom of the patient's decision to withhold genetic risk information from his relative, but chose to respect what they considered to be an unwise choice. Even though professional guidance considers that clinicians have the discretion to breach confidence where they believe this to be justified, (Royal College of Physicians, Royal College of Pathologists and the British Society of Human Genetics, 2006; GMC, 2017) clinicians find it difficult to exercise this discretion in line with their convictions against the backdrop of the legal prioritisation of the duty to maintain confidence. Thus, the professional discretion is not being freely exercised because of doubts about the legal protection available in the event of disclosure. The reliance on consent as the legal basis for setting aside the duty of confidence often vetoes sharing information with relatives. This paper argues that an objective approach based on privacy, rather than a subjective consent-based approach, would give greater freedom to clinicians to exercise the discretion which their professional guidance affords.

摘要

当患者向亲属隐瞒其基因信息的利益与亲属因该信息能表明自身遗传风险而想知晓该信息的利益之间存在冲突时,临床医生通常能够通过保密来保护自己免受法律诉讼,即便从专业角度来看,他们认为这样做并不正确。在ABC诉圣乔治医疗保健国民保健服务信托基金案([2017] EWCA Civ 336)中,医疗团队记录了他们对患者向其亲属隐瞒基因风险信息这一决定是否明智的担忧,但还是选择尊重他们认为不明智的选择。尽管专业指南认为,临床医生在认为有正当理由时有权违背保密义务(皇家内科医师学院、皇家病理学家学院和英国人类遗传学学会,2006年;英国医学总会,2017年),但在保密义务的法律优先地位的背景下,临床医生发现很难按照自己的信念行使这一酌处权。因此,由于对披露信息时可获得的法律保护存在疑虑,专业酌处权并未得到自由行使。将同意作为搁置保密义务的法律依据,往往会否决与亲属分享信息。本文认为,基于隐私的客观方法,而非基于主观同意的方法,将给予临床医生更大的自由来行使专业指南赋予他们的酌处权。