Preface

The Australian Democrats endorse Recommendation 1 of the Chair’s Report., specifically:

(i)	The creation of a national working party in which Commonwealth departments would hold responsibility of administration of the consultation process and the establishment of a working group including State and Territory representatives, experts and representatives of stakeholder groups;

(ii)	The Commonwealth Government grant consideration to a reference to the Senate Legal and Constitutional References Committee to undertake a thorough examination of the issues relating to genetic privacy an discrimination, including insurance, employment, provision of goods and services, clinical diagnosis and treatment, conduct of medical and other research and genetic information concerning children, and;

(iii)	An ongoing responsibility for the appropriate Commonwealth departments to monitor developments, with a view to drafting legislation as required.

The Democrat’s have raised their concerns regarding the following aspects of the Report:

(i)	That diagnostic genetic testing is not substantially different from any other diagnostic tests and generates few privacy and discrimination issues.

Unlike all other forms of information issues, including infection information of an individual, genetic information crosses generational barriers. Disclosure of genetic information of an individual extends beyond the individual to surrounding blood relatives.  Therefore raising new and unique privacy and discrimination issues.

(ii)	That the Bill affords little protection for the information contained in the collections associated with newborn screening programs.

The Democrat’s maintain that the Bill’s definition of a DNA sample covers all sources of genetic information which should be private and therefore should safeguard the privacy rights of persons whose samples are in newborn screening programs.

(iii)	That it is inappropriate to compare health treatment and insurance situations between the United States and Australia due to Australia’s universal health care system and the requirement under the National Health Act 1953 for private insurers to use the ‘community rating’ principle to determine premium rate.

The Democrats do not endorse this statement as health-care waiting list status and genetic statistical classes and groupings despite these measures still pose a privacy and discrimination threat in Australia as in the United States.  The Democrat’s maintain that it is appropriate and worthwhile to compare and employ United States situations and legislation.

Therefore the Australian Democrats, for the afore-mentioned reasons, do not sign off on the conclusions contained in the Chair’s Report.  However, we accept the summary of the evidence as contained in the Chair’s Report.