7 Sep
2006

















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     Genetic Privacy

In a step forward by a government that has proved reluctant to grapple meaningfully with privacy issues the federal Attorney-General has announced that human genetic information will now be protected under the Privacy Act 1988, following passage of the Privacy Legislation Amendment Bill 2006 today.

The Bill implements selected recommendations of the Australian Law Reform Commission's 2003 Essentially Yours: The Protection of Human Genetic Information report.

That report's key recommendations included:

• establishment of a standing Human Genetics Commission of Australia (HGCA) to provide high-level, technical and strategic advice about current and emerging issues in human genetics, as well as providing a consultative mechanism for the development of policy statements and national guidelines in this area.
• amendment of discrimination laws to clearly prohibit unlawful discrimination based on a person's real or perceived genetic status.
• harmonisation of privacy laws to address the particular challenges of human genetic information, something that requires extension of privacy protection to genetic samples and acknowledgment of "the familial dimension of genetic information" (doctors for example should be authorised to disclose personal genetic information to a genetic relative in circumstances where disclosure is necessary to lessen or prevent a serious threat to an individual's life, health, or safety).
• creation of a new criminal offence to prohibit an individual or a corporation from submitting another person's sample for genetic testing, or conducting such testing, knowing (or recklessly indifferent to the fact) that this is done without the consent of the person concerned or other lawful authority.
• strengthening of ethical oversight of genetic research to ensure all genetic research complies with NHMRC standards, better support of Human Research Ethics Committees (HRECs), more guidance to researchers and research participants about best practice, new rules to govern operation of human genetic research databases, tighter reporting requirements and enhanced powers for the Therapeutic Goods Administration (TGA) regarding genetic testing devices that may be provided directly to the public.
• development of safeguards regarding insurance industry use of genetic information for underwriting purposes and DNA parentage testing.
• development of national minimum standards with respect to the collection, use, storage, destruction and index matching of forensic material (and the DNA profiles created from such material). No inter-jurisdictional sharing of information should be permitted except in accordance with these national minimum standards.

The A-G commented that "It is important that genetic information is given the same protection as other sensitive information. Such information will now be considered 'health information' or 'sensitive information' for the purposes of the Privacy Act".

The Bill also ensures continued operation of the Prescription Shopping Information Service (PSIS), which provides medical practitioners with information about patients they suspect may be obtaining prescription medicines in excess of their therapeutic needs.





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