The emerging international biomedical law tends to recognise the right not to know one's genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient's autonomy, with doctors' duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient's relatives who, without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be "activated" by the individual's explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons.

译文

新兴的国际生物医学法倾向于承认不知道自己遗传状况的权利。但是,在国内法中,行使这项权利的基础和条件仍然不清楚。除此之外,这种权利在理论层面上被批评为与患者的自主权,医生告知患者的义务以及与家人的团结相矛盾。这种情况尤其发生在不公开对患者亲属造成严重伤害的风险时,如果没有这些重要信息,可能会被剥夺预防或治疗措施。本文认为,第一,个人可能有合法的利益,不知道自己的基因构成,以避免严重的心理后果; 第二,这种利益,远非与自主相反,可能构成自主的增强; 第三,不知道的权利不能被推定,但是必须由个人的明确选择来 “激活”,第四,这不是绝对的权利,因为当有必要向患者披露以避免对第三人造成严重伤害的风险时,它可能会受到限制。

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