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Disclosure of genetic results to at-risk relatives without consent: issues for health care professionals in Australia
Citation
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]
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Abstract
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 |
| Research Field: | Law and Society |
| 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 |
| Deposited By: | Law |
| Deposited On: | 2020-01-13 |
| Last Modified: | 2020-01-13 |
| Downloads: | 0 |
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