Duty to warn at-risk relatives for genetic disease: Genetic counselors' clinical experience
Duty to warn at-risk relatives for genetic disease: Genetic counselors' clinical experience
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DOI：
10.1002/ajmg.c.10005
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发表时间：
2003-05-15
影响因子：
3.1
通讯作者：
Robin, NH
中科院分区：
文献类型：
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作者：
Dugan, RB;Wiesner, GL;Robin, NH
当患者拒绝告知亲属他们的遗传疾病风险时，遗传医疗保健专业人员面临着相互冲突的道德义务。问题的一个方面是尊重和保护病人隐私权的义务。另一方面是防止伤害和促进家庭成员福利的义务，这意味着即使未经病人同意，也有责任警告处于危险中的亲属。为了检验这一问题的实际临床影响，我们进行了一项试点研究，探讨遗传咨询师对这一冲突的经验。制定了一项调查，并提供给全国遗传咨询师协会的成员。问题要么是多项选择题，要么是开放式的。几乎一半的受访者（119/259; 46%）有病人拒绝通知有风险的亲属。最常被引用的拒绝理由分别是疏远的家庭关系、改变的家庭动态、保险歧视和就业歧视。在这119名咨询师中，24名（21%）报告说，他们认真考虑在未经患者同意的情况下警告有风险的亲属，其中一名确实透露了。有三个因素始终使咨询师不太可能透露：他们的病人的潜在情绪反应，亲属和病人之间的关系，以及亲属通过其他方式了解疾病的机会。这些结果表明，虽然在临床实践中经常遇到的冲突，这是罕见的情况仍然没有得到解决的程度，遗传咨询师实际上考虑警告有风险的亲属。然而，当遇到这种情况时，本研究中的咨询师报告说，未经同意的披露率低于先前使用假设情况的研究的预期。这可能是辅导员不承认有责任警告处于危险中的亲属作为其角色和专业义务的组成部分。(C)2003 Wiley-Liss，Inc.
When a patient refuses to inform relatives of their risk for genetic disease, the genetic healthcare professional is faced with conflicting ethical obligations. On one side of the issue is the obligation to respect and protect patients' right to privacy. On the other side is the obligation to prevent harm and promote the welfare of the family members, which suggests a responsibility to warn at-risk relatives, even without the patient's consent. In an effort to examine the actual clinical impact of this issue, we conducted a pilot study that explored genetic counselors' experience with this conflict. A survey was developed and made available to members of the National Society of Genetic Counselors. Questions were either multiple-choice responses or open-ended. Almost half of respondents (119/259; 46%) had had a patient refuse to notify an at-risk relative. The most commonly cited reasons for refusal were estranged family relationships, altering family dynamics, insurance discrimination, and employment discrimination, respectively. Of these 119 counselors, 24 (21%) reported that they seriously considered warning the at-risk relatives without patient consent, and one actually did disclose. Three factors consistently made the counselors less likely to disclose: their patient's potential emotional reaction, the relationship between the relative and patient, and the chance that the relative could be aware of the disease by another means. These results suggest that while the conflict is often encountered in clinical practice, it is rare that the situation remains unresolved to the extent that genetic counselors actually consider warning at-risk relatives. However, when the situation was encountered, the counselors in this study reported a lower rate of disclosure without consent than would have been anticipated based on previous studies that used hypothetical situations. It may be that counselors do not recognize a duty to warn at-risk relatives as integral to their role and professional obligations. (C) 2003 Wiley-Liss, Inc.