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Abstract

Disclosure of genetic information without consent of the patient (proband)challenges the legal frameworks of privacy and confidentiality. Changes toprivacy legislation enable and provide guidelines for undertaking disclosure,with the purpose of reducing the harm to genetic relatives who, armed withsuch information, may seek predictive testing themselves. Nevertheless,significant uncertainty remains for health care professionals in the applicationof the discretion to disclose genetic information to at-risk relatives. First,jurisdictional inconsistencies in privacy legislation present challenges forthe provision of genetic services across the country. Second, the currentguidelines provide insufficient clarity regarding the justification for disclosureof genetic information to reduce psychological harm to relatives. Third, theimplications of a potential expansion of a legal duty of care to inform geneticrelatives in some circumstances indicates that such a duty would be undulyburdensome for health care professionals, and suggests that revision ofthe threshold for use – rather than disclosure – of depersonalised geneticinformation may represent a pragmatic way forward.

Item Type:	Article
Authors/Creators:	McWhirter, R and Johnston, C and Burke, J
Keywords:	genetic information, genetic privacy, consent, genetic counselling, clinical genetics
Journal or Publication Title:	Journal of Law and Medicine
Publisher:	Lawbook Co.
ISSN:	1320-159X
Copyright Information:	Copyright 2019 Thomson Reuters
Related URLs:	Google Scholar: McWhirter, R UTAS Profile: McWhirter, R
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