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携带者检测中的未成年人与知情同意:欧洲临床遗传学家调查

Minors and informed consent in carrier testing: a survey of European clinical geneticists.

作者信息

Borry P, Stultiens L, Goffin T, Nys H, Dierickx K

机构信息

Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Leuven, Belgium.

出版信息

J Med Ethics. 2008 May;34(5):370-4. doi: 10.1136/jme.2007.021717.

DOI:10.1136/jme.2007.021717
PMID:18448719
Abstract

PURPOSE

A study was made of attitudes of clinical geneticists regarding the age at which minors should be allowed to undergo a carrier test and the reasons they provide to explain their answer.

METHODS

European clinical institutions where genetic counselling is offered to patients were contacted. 177 (63%) of the 287 eligible respondents answered a questionnaire.

RESULTS

Clinical geneticists were significantly more in favour of providing a carrier test to a younger person if the request was made together with the parents than if the adolescent requested the test personally. Although a large fraction of respondents (16%-30%) were "neither unwilling nor willing" to provide a carrier test to a 16-year-old adolescent who requested the test personally, for most disorders slightly more clinical geneticists were "very willing" or "willing".

CONCLUSION

Age is not the only decisive element when considering the participation of adolescents in decisions affecting their health. The clinical geneticists referred to cognitive, emotional and sexual maturity and the support of parents as crucial elements in their comments regarding when to tell children about their genetic risk or to allow adolescents to request a carrier test.

摘要

目的

对临床遗传学家关于应允许未成年人进行携带者检测的年龄态度以及他们给出的解释其答案的原因进行了一项研究。

方法

与向患者提供遗传咨询的欧洲临床机构进行了联系。287名符合条件的受访者中有177人(63%)回答了一份问卷。

结果

如果携带者检测的请求是与父母一起提出的,临床遗传学家显著更倾向于向较年轻的人提供检测,而不是青少年个人提出检测请求的情况。尽管很大一部分受访者(16%-30%)对于亲自提出检测请求的16岁青少年“既不不愿意也不愿意”提供携带者检测,但对于大多数疾病,“非常愿意”或“愿意”提供检测的临床遗传学家略多一些。

结论

在考虑青少年参与影响其健康的决策时,年龄并非唯一的决定性因素。临床遗传学家将认知、情感和性成熟以及父母的支持视为在讨论何时告知孩子其遗传风险或允许青少年请求进行携带者检测时的关键因素。

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