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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.

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。

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