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Disclosing genetic information to family members without consent: five Australian case studies

Tiller, J, Bilkey, G, Macintosh, R, O'Sullivan, S, Groube, S, Palover, M, Pachter, N, Rothstein, M, Lacaze, P and Otlowski, M ORCID: 0000-0003-4707-4325 2020 , 'Disclosing genetic information to family members without consent: five Australian case studies' , European Journal of Medical Genetics, vol. 63, no. 11 , pp. 1-10 , doi: 10.1016/j.ejmg.2020.104035.

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Abstract

Genetic risk information is relevant to individual patients and also their blood relatives. Health practitioners (HPs) routinely advise patients of the importance of sharing genetic information with family members, especially for clinically actionable conditions where prevention is possible. However, some patients refuse to share genetic results with at-risk relatives, and HPs must choose whether to use or disclose genetic information without consent. This requires an understanding of their legal and ethical obligations, which research shows many HPs do not have. A recent UK case held that HPs have a duty to a patient's relatives where there is a proximate relationship, to conduct a balancing exercise of the benefit of disclosure of the genetic risk information to the relative against the interest of the patient in maintaining confidentiality. In Australia, there is currently no legal duty to disclose genetic information to a patient's at-risk relatives, but there are laws and guidelines governing unconsented use/disclosure of genetic information. These laws are inconsistent across different Australian states and health contexts, requiring greater harmonisation. Here we provide an up-to-date and clinically accessible resource summarising the laws applying to HPs across Australia, and outline five Australian case studies which have arisen in clinical genetics services, regarding the disclosure of genetic results to relatives without consent. The issues addressed here are relevant to any Australian HP with access to genetic information, as well as HPs and policy-makers in other jurisdictions considering these issues.

Item Type: Article
Authors/Creators:Tiller, J and Bilkey, G and Macintosh, R and O'Sullivan, S and Groube, S and Palover, M and Pachter, N and Rothstein, M and Lacaze, P and Otlowski, M
Keywords: genetics, ethics, disclosure, relatives, duty to warn
Journal or Publication Title: European Journal of Medical Genetics
Publisher: Elsevier Masson
ISSN: 1769-7212
DOI / ID Number: 10.1016/j.ejmg.2020.104035
Copyright Information:

© 2020 Elsevier Masson SAS. All rights reserved.

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