Australia: Federal Government Gives the Green Light to a Genetic Information Framework

Last Updated: 13 March 2006
Article by Amanda Turnill

Key Point

  • The Federal Government has supported key "Essentially Yours" recommendations which, if implemented, will affect a wide range of areas including genetic testing, health privacy, insurance, employment and civil proceedings.

The Federal Government has endorsed numerous proposals aimed at regulating the use of genetic information in Australia.

In 2003 when the Australian Law Reform Commission ("ALRC") and Australian Health Ethics Committee ("AHEC") released a report with the findings of their two-year study into the protection of human genetic information, Australia was applauded for its proactive policy development. Essentially Yours: the Protection of Human Genetic Information in Australia ("the Report") proposed 144 recommendations to deal with the legal, social and ethical implications of genetic science. The recommendations in the Report are directed at Commonwealth, State and Territory governments as well as statutory authorities. Some implementation of these recommendations has already occurred, including by the Government.[1]

On 9 December 2005, the Federal Government released a response to the Report in which it announced support for a large number of the Report's recommendations. The Government's support paves the way for the framework envisaged by the Report to be put in place.

This article discusses some of the key responses, focusing on those which are significant to the life sciences sector.

The creation of a Human Genetics Advisory Committee

One of the key recommendations of the Report was the establishment of a statutory body to advise Australian Governments about human genetics issues. In response, the Government has recently established the Human Genetics Advisory Committee as a principal committee of the National Health and Medical Research Council ("NHMRC"). In the May 2005 budget, the Government announced that it will provide funding of $7.6 million over the next four years.

The Human Genetics Advisory Committee has been created to provide high-level technical and strategic advice on:

  • human genetics issues, particularly regarding the expected effects on health and healthcare;
  • the ethical, legal and social implications of developments in human genetics; and
  • other matters as the Federal Minister for Health and Ageing determines from time to time.

Stronger oversight of genetic research and testing

The Report made numerous recommendations regarding enforcing compliance with the National Statement on Ethical Conduct in Research Involving Humans ("the National Statement"), encouraging best practice in genetic research and strengthening ethics reviews that were directed to the NHMRC. The Government notes that these issues are mainly the responsibility of the NHMRC. The NHMRC has commenced its review of the National Statement.

Also, the Report made numerous suggestions regarding to strengthen and harmonise genetic testing accreditation requirements and ethical standards, including in relation to parentage testing. These matters are largely for State and Territory Governments, the National Pathology Accreditation Advisory Council and the National Association of Testing Authorities Australia. However, the Government, in its response, noted that:

  • the Therapeutic Goods Administration ("TGA") is finalising legislation to regulate in-vitro diagnostic devices for therapeutic use; and
  • it does not support amending the Therapeutic Goods Act 1989 (Cth) to enable the TGA to regulate DNA identification test kits used in testing provided directly to the public.

Criminal offence for non-consensual genetic testing

The Government supports creating a criminal offence relating to non-consensual genetic testing. Under the proposed offence, any individual or corporation who or that, without lawful authority, submits a sample for genetic testing, or conducts such testing, knowing or recklessly indifferent to the fact that the individual did not consent to the testing, could be liable.

This proposal will pressure health service providers to ensure appropriate consent to testing has been obtained. It has been referred to the Standing Committee of Attorneys-General for consideration.

Amendment and harmonisation of health privacy laws

The Report recommended that Federal, State and Territory governments strive to harmonise information and health privacy legislation as it relates to human genetic information. The National Health Privacy Group, who has been set the task of developing a national health policy framework, took this recommendation into account in developing the proposed National Health Privacy Code ("the Privacy Code"). The Privacy Code is under consideration by Commonwealth, State and Territory Health Ministers.

The Report also recommended various amendments be made to the Privacy Act 1988 (Cth) to:

  • ensure "health information" includes genetic information and "sensitive information" includes human genetic test information; and
  • permit a health care professional to disclose genetic information about their patient to a genetic relative of that patient where disclosure is necessary to prevent a serious health threat to an individual.

Whilst the Government has not enacted these changes yet, it supports them in principle and they have been considered in the context of the Privacy Code.

The Government does not support:

  • giving individuals a right to access bodily samples of their first-degree genetic relatives to obtain genetic information;
  • amending the Privacy Act to ensure all small businesses that hold genetic information are subject to this Act; and
  • enacting legislation to provide enforceable standards for handling genetic samples and ensuring the relevant Privacy Principles cover genetic samples.

Amendment and harmonisation of anti-discrimination laws

The Government agrees with the Report that any potential discriminatory misuse of genetic information should be dealt with within the context of the Disability Discrimination Act 1992 (Cth). The definition of "disability" in this Act and the Workplace Relations Act 1996 (Cth) should therefore be amended to reflect discrimination based on genetic status.

The Report and the Government have both called for the States and Territories to bring their anti-discrimination laws in line with these proposed amendments.

Employers' use of genetic information restricted

The Report made numerous recommendations regarding the use of genetic information by employers which may have implications for all employers and employees, not just the life sciences sector. The Report advised, and the Government agreed, that employers:

  • should not collect or use genetic information in relation to job applicants or employees, except in limited circumstances where this is consistent with privacy, anti-discrimination and occupational health and safety legislation;
  • should clearly set out the inherent requirements of a job where genetic information is used to assess the ability of an applicant or employee to perform those requirements; and
  • should be prohibited from requesting genetic tests results for use in a discriminatory way.

Safeguards for the insurance industry

The Report found that there are concerns within the community about the insurance industry's use of genetic information. The key issues identified were: privacy of genetic information; genetic discrimination; and use of genetic information in the underwriting process. However, most of the recommendations were directed at the insurance industry, including insurance companies, the Investment and Financial Services Association ("IFSA") and the Insurance Council of Australia ("ICA") rather than the Government.

The Report did, however, recommend that the Government should amend the Insurance Contracts Act 1984 (Cth) to clarify the obligation of insurers to provide reasons for unfavourable underwriting decisions upon request. Where a decision has been based on genetic information, the insurer should provide reasons which are clear and meaningful and which explain the actuarial, statistical or other basis for that decision. The Government agrees, but stated that the best way to achieve this outcome would be through the IFSA and ICA amending their policies.

Continuing legal education for judges and legal practitioners on genetic information

Genetic information has potential evidentiary use in personal injury, medical negligence and product liability cases, as well as other civil cases. As such, the Report recommended that the National Judicial College of Australia and the Law Council of Australia should develop and promote continuing legal education programs for judges and legal practitioners on the complexities of using genetic information as evidence in both civil and criminal cases. The Government supports this recommendation and has passed it on to these professional bodies.


The ALRC and AHEC Report was a significant step towards the creation of a framework to regulate genetic science in Australia. Implementation of the Report's recommendations has begun and is likely to affect a wide range of areas including civil proceedings, employment, occupational health and safety, genetic research and health services. Other recommendations not discussed in this article affect immigration, criminal law, forensics and workers' compensation. The Government's endorsement of many of the Report's key recommendations will further propel the implementation of this regulatory framework.


[1] Each reference in this article to "Government" is to the Federal Government unless otherwise specified.

The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.

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