University of Auckland.
J Law Med. 2023 Jul;30(2):410-429.
Once someone is diagnosed with a genetic abnormality or disorder, that information can be extremely valuable to their biological relatives. It may allow them to access preventive treatment or make informed decisions, such as whether to have a biological child or not. However, when the original family member refuses to disclose that information to at-risk relatives, a conflict arises between their right to patient confidentiality and their relatives' right to know. Aotearoa New Zealand lacks a specific, workable mechanism for disclosing genetic information to at-risk relatives. This article traverses the theoretical and practical issues involved in non-consensual disclosure of genetic information to suggest a new path for Aotearoa. It argues that the current, Western attitude of autonomy as an individual right free from obligations to others is no longer an appropriate justification for confidentiality over genetic information. Instead, patients diagnosed with a genetic abnormality or disorder should only be entitled to confidentiality where they have a reasonable expectation of privacy - determined by weighing the objective interests for and against disclosure. This approach recognises that we ought to consider our close relationships with others when we exercise autonomy over what is ultimately shared family information.
一旦某人被诊断出患有遗传异常或疾病，这些信息对其生物学亲属来说可能极具价值。它可以使他们获得预防性治疗或做出明智的决策，例如是否要生育亲生子女。然而，当原始家庭成员拒绝向有风险的亲属透露这些信息时，就会在他们的患者保密权和亲属的知情权之间产生冲突。新西兰缺乏向有风险的亲属披露遗传信息的具体可行机制。本文探讨了非自愿披露遗传信息所涉及的理论和实际问题，为新西兰提出了一条新的路径。它认为，当前西方将自主权作为一种不受他人义务约束的个人权利的态度，不再是对遗传信息保密的恰当理由。相反，只有在被诊断出患有遗传异常或疾病的患者对隐私有合理的期望时，他们才有权享有保密权——通过权衡披露的客观利益和反对意见来确定。这种方法认识到，当我们对最终共享的家庭信息行使自主权时，我们应该考虑到我们与他人的亲密关系。
