Literature DB >> 25832164

Disclosing genetic information to at-risk relatives: new Australian privacy principles, but uniformity still elusive.

Margaret F A Otlowski1.   

Abstract

There is growing understanding of the need for genetic information to be shared with genetic relatives in some circumstances. Since 2006, s 95AA of the Privacy Act 1988 (Cwlth) has permitted the disclosure of genetic information to genetic relatives without the patient's consent, provided that the health practitioner reasonably believes that disclosure is necessary to lessen or prevent a serious threat to the life, health or safety of the genetic relatives. Enabling guidelines were introduced in 2009. These were limited to the private sector, and excluded doctors working in the public sector at both Commonwealth and state and territory levels. Privacy legislation was amended in March 2014, and new Australian Privacy Principles, which replace the National Privacy Principles and Information Privacy Principles, now cover the collection and use of personal information. The Privacy Act and the Australian Privacy Principles now extend to practitioners employed by the Commonwealth but not to health practitioners working in state and territory public hospitals. In this article, I review these legislative developments and highlight the implications of the lack of uniformity and the consequent need for a collaborative, uniform approach by states and territories.

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Year:  2015        PMID: 25832164     DOI: 10.5694/mja14.00670

Source DB:  PubMed          Journal:  Med J Aust        ISSN: 0025-729X            Impact factor:   7.738


  6 in total

Review 1.  Practical Aspects in Genetic Testing for Cardiomyopathies and Channelopathies.

Authors:  Han-Chih Hencher Lee; Chor-Kwan Ching
Journal:  Clin Biochem Rev       Date:  2019-11

Review 2.  Informing relatives of their genetic risk: an examination of the Belgian legal context.

Authors:  Amicia Phillips; Thomas Bronselaer; Pascal Borry; Ine Van Hoyweghen; Danya F Vears; Laurent Pasquier; Stefaan Callens
Journal:  Eur J Hum Genet       Date:  2022-01-08       Impact factor: 5.351

3.  Clinician-Stakeholders' Perspectives on Using Patient Portals to Return Lynch Syndrome Screening Results.

Authors:  Diane M Korngiebel; Kathleen M West; Wylie Burke
Journal:  J Genet Couns       Date:  2017-11-21       Impact factor: 2.537

4.  Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom.

Authors:  Daniele Carrieri; Sandi Dheensa; Shane Doheny; Angus J Clarke; Peter D Turnpenny; Anneke M Lucassen; Susan E Kelly
Journal:  Eur J Hum Genet       Date:  2017-01-04       Impact factor: 4.246

5.  When to break the news and whose responsibility is it? A cross-sectional qualitative study of health professionals' views regarding disclosure of BRCA genetic cancer risk.

Authors:  Alison Luk Young; Phyllis N Butow; Katherine M Tucker; Claire E Wakefield; Emma Healey; Rachel Williams
Journal:  BMJ Open       Date:  2020-02-25       Impact factor: 2.692

6.  Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden.

Authors:  Andreas Andersson; Carolina Hawranek; Anna Öfverholm; Hans Ehrencrona; Kalle Grill; Senada Hajdarevic; Beatrice Melin; Emma Tham; Barbro Numan Hellquist; Anna Rosén
Journal:  Hered Cancer Clin Pract       Date:  2020-09-15       Impact factor: 2.857

  6 in total

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