eCite Digital Repository

Disclosure of genetic results to at-risk relatives without consent: issues for health care professionals in Australia


McWhirter, R and Johnston, C and Burke, J, Disclosure of genetic results to at-risk relatives without consent: issues for health care professionals in Australia, Journal of Law and Medicine, 27, (1) pp. 108-121. ISSN 1320-159X (2019) [Refereed Article]

Copyright Statement

Copyright 2019 Thomson Reuters


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.

Item Details

Item Type:Refereed Article
Keywords:genetic information, genetic privacy, consent, genetic counselling, clinical genetics
Research Division:Law and Legal Studies
Research Group:Law in context
Research Field:Law and society and socio-legal research
Objective Division:Expanding Knowledge
Objective Group:Expanding knowledge
Objective Field:Expanding knowledge in law and legal studies
UTAS Author:McWhirter, R (Dr Rebekah McWhirter)
UTAS Author:Burke, J (Dr Jo Burke)
ID Code:136676
Year Published:2019
Web of Science® Times Cited:3
Deposited By:Law
Deposited On:2020-01-13
Last Modified:2020-05-19

Repository Staff Only: item control page