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Disclosure of genetic results to at-risk relatives without consent: issues for health care professionals in Australia
journal contributionposted on 2023-05-20, 09:33 authored by Rebekah McWhirterRebekah McWhirter, Johnston, C, Jo BurkeJo Burke
Disclosure of genetic information without consent of the patient (proband) challenges the legal frameworks of privacy and confidentiality. Changes to privacy legislation enable and provide guidelines for undertaking disclosure, with the purpose of reducing the harm to genetic relatives who, armed with such information, may seek predictive testing themselves. Nevertheless, significant uncertainty remains for health care professionals in the application of the discretion to disclose genetic information to at-risk relatives. First, jurisdictional inconsistencies in privacy legislation present challenges for the provision of genetic services across the country. Second, the current guidelines provide insufficient clarity regarding the justification for disclosure of genetic information to reduce psychological harm to relatives. Third, the implications of a potential expansion of a legal duty of care to inform genetic relatives in some circumstances indicates that such a duty would be unduly burdensome for health care professionals, and suggests that revision of the threshold for use – rather than disclosure – of depersonalised genetic information may represent a pragmatic way forward.
Publication titleJournal of Law and Medicine
Department/SchoolFaculty of Law
Place of publicationAustralia
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