Main recommendations
The 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.
Discrimination laws should be amended to prohibit discrimination based on a person's real or perceived genetic status.
Privacy laws should be harmonised and tailored to address the particular challenges of human genetic information, including extending protection to genetic samples, and acknowledging the familial dimension of genetic information. For example, doctors might be authorised to disclose confidential information to a genetic relative where it is necessary to avert a serious threat to an individual's life, health, or safety.
Ethical oversight of genetic research should be strengthened by: ensuring that all genetic research complies with NHMRC standards; better supporting Human Research Ethics Committees; providing more guidance to researchers and research participants about best practice; developing new rules to govern the operation of human genetic research databases; and tightening reporting requirements.
Employers should not be permitted to collect or use genetic information except in those rare circumstances where this is permitted under anti-discrimination laws (as amended) or is necessary to protect the health and safety of workers or third parties, and the action complies with stringent HGCA standards.
The insurance industry should be required to adopt a range of improved consumer protection policies and practices with respect to its use of genetic information (including family history) for underwriting purposes. New laws and practices should ensure that: genetic information is only used in a scientifically reliable and actuarially sound manner; reasons are provided for any unfavourable underwriting decision; industry complaints-handling processes are strengthened and extended to cover underwriting decisions; and industry education and training about genetics are improved.
A new criminal offence should be created to prohibit someone submitting another person's sample for genetic testing knowing that this is done without consent or other lawful authority (eg a court order, or the statutory authority given to police officers).
Lack of harmonisation is threatening the effectiveness of any national approach to sharing DNA information for law enforcement purposes. Australian governments should develop national minimum standards for the collection, use, storage, destruction and matching of DNA samples and profiles. No inter-jurisdictional sharing of information should be permitted except in accordance with these minimum standards.
DNA parentage testing should be conducted only with the consent of each person sampled, or pursuant to a court order. Where a child is unable to make an informed decision, testing should proceed only with the consent of both parents, or a court order.
A full list of the report's 144 recommendations is available online.