MEDIA RELEASE
Tuesday 15 December 2009
New privacy guidelines for health practitioners on disclosing
genetic information
The National Health and Medical Research Council (NHMRC), in cooperation with
the Office of the Privacy Commissioner (OPC), today released new guidelines to
assist health practitioners in making decisions about disclosing genetic information to
their patient’s genetic relatives.
In 2003, a joint inquiry by the Australian Health Ethics Committee and the Australian
Law Reform Commission led to an amendment of the Privacy Act regarding the
disclosure of genetic information by health practitioners.
The amendment required the development and issuing of these guidelines which have
undergone extensive public consultation and been approved under section 95AA of
the Privacy Act.
Dr Sandra Hacker AO, chair of the NHMRC’s Guidelines Working Party, said the
guidelines specify the strict requirements that must be met by health practitioners if
they are faced with the difficult decision of having to disclose genetic information
without patient consent.
“These new guidelines permit doctors to disclose information to a genetic relative of
the patient without the patient's consent, but only in situations where they reasonably
believe that disclosure is necessary to lessen or prevent a serious threat to the life,
health or safety of the patient's relative,” Dr Hacker said.
“It is important to emphasise that doctors can not disclose information to non-genetic
relatives, for example husbands or wives, or when there is no threat to the genetic
relative.”
The Australian Privacy Commissioner, Karen Curtis, has issued a Temporary Public
Interest Determination (TPID) which will allow medical practitioners to collect or use
the contact details of a patient’s genetic relatives in situations where the guidelines
permit the disclosure of information.
“It is important to note that the guidelines and TPID do not require disclosure of
information, but rather provide the framework for this to occur under the appropriate
circumstances,” Ms Curtis said.
“Disclosure of genetic information without consent is only permissible under the
Privacy Act if it is in accordance with the guidelines.”
The use and disclosure of genetic information to a patient’s genetic relative under
Section 95AA of the Privacy Act 1988 (Cth) – Guidelines for health practitioners in
the private sector’ are available for download at
Further information is available from the Office of the Privacy Commissioner:
For more information please contact:
NHMRC: Simon Tidy 0422 008 512
Office of the Privacy Commissioner: Ben Apple 0407 663 968
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