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Public consultation on the Disclosure of genetic information to a patient's genetic relatives under section 95AA of the Privacy Act 1988 (Cth) – Guidelines for health practitioners in the private sector.

In 2003, a joint inquiry by the Australian Health Ethics Committee (AHEC) and Australian Law Reform Commission (ALRC) recommended that privacy legislation be amended to broaden the circumstances in which health practitioners may use or disclose genetic information. The Privacy Legislation Amendment Act 2006 (Cth) (the Amendment Act) makes changes to the Privacy Act 1988 (Cth) to allow health practitioners to disclose patient’s genetic information, whether or not they give consent, under certain circumstances. This is reflected in an additional exception to National Privacy Principle (NPP) 2 — NPP 2.1(ea) — which governs the use and disclosure of personal information in the private sector. The amendments do not oblige disclosure of information but provide the framework for this to occur under the appropriate circumstances.

The Guidelines specify legal obligations that apply when disclosing genetic information relevant to NPP 2.1(ea), and also provide explanatory material to guide and advise health practitioners on how to meet those obligations. Specifically, the Guidelines establish when, by whom and in what manner disclosure without consent may take place, with particular reference to two primary statutory tests — that the threat be a “serious” one to life, health or safety, and the disclosure be necessary to “lessen or prevent” that threat. It should be noted that health practitioners remain subject, in relation to these disclosures, to the other obligations created by the NPPs.

You are invited to make a submission to the NHMRC about the draft Guidelines.

How to make your submission

Please make your submission in writing, by email or on audiotape and include your name and address or phone number at which we can contact you if required.

Please send your submission to:

Ms Cheryl Cooke
Evidence Translation Section
NHMRC
GPO Box 1421
CANBERRA ACT 2601
Tel: (02) 6217 9486 Fax: (02) 6217 9035
Email: cheryl.cooke@nhmrc.gov.au

Closing date:

The closing date for submissions is Saturday 12 April 2008.

Further information:

» Download: Draft Consultation - Disclosure of genetic information to a patient's genetic relatives under section 95AA of the Privacy Act 1988 (Cth) – Guidelines for health practitioners in the private sector (PDF, 581kb)

For further information please contact the Project Officer (contact details above).

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