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Legal control over personal genetic data: how far should we go?

By Natasha Stott Despoja - posted Tuesday, 31 October 2000


Non-consensual disclosure of confidential information is not exempted under my Bill as it does not maintain the doctor-patient relationship and as medical research is generally not considered a fundamental public responsibility (for example in the way that enforcement of the criminal law is traditionally considered).

Since the introduction of the Genetic Privacy and Non-discrimination Bill in 1998 the Senate has considered the issue through referral to the Senate Legal and Constitutional Legislative Committee which reported in March 1999.

The Committee recommended the creation of a national working party, tasking the appropriate Commonwealth departments with the administration and consultation process, and the inclusion of State and Territory representatives, experts and representatives of stakeholder groups in the working group.

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It also recommended that the Bill not proceed, pending a thorough examination of genetic privacy and discrimination issues including consideration of insurance, employment, provision of goods and services, clinical diagnosis and treatment, conduct of medical and other research and genetic information concerning children.

Though the Senate passed a motion earlier this year acknowledging that no action had been taken, it was not until the media got wind of the documented cases of genetic discrimination in Australia that the Attorney-General and Minister Wooldridge were forced to announce an inquiry.

Since the introduction of my Bill, the domestic public policy regarding the effective protection of genetic information, has developed extensively. In only two years an issue which was generally rarely considered outside expert communities, is now the subject of Channel 9 comedy debates and a Federal Government inquiry.

We have seen since this time President Clinton endorse legislation to protect employees of federal agencies in the United States from negative genetic discrimination on the basis of employment records, the completion of the Human Genome Project, and the impact of science fiction works such as GATTACA which can not be underestimated for impact on the public psyche.

Public concern is growing and will not be stemmed by scientists simply stating that it is ‘O.K.’ or ‘safe’ – that the experts have it under control. The days of ‘trust me I am wearing a white coat’ are long gone. The public are demanding balanced information and effective regulation. It is only through such measures that community confidence will be won.

Back in Australia, academic debate surrounding the issue has also evolved significantly. David Keays’ research at the University of Melbourne has provided the community and the Parliament with evidence the nature of which some of us have expected for sometime – documented domestic cases of genetic discrimination – before which we only had international studies from which to extrapolate.

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IFSAs genetic testing policy stipulates that insurers will not initiate any genetic tests on applicant for insurance, that insurers will not use genetic tests as the basis of preferred risk underwriting, that insurers will ensure that results of existing genetic tests are only obtained by written consent of the tested individual and that the information be only used in the assessment of an insurance application in respect of the individual on whom the test was conducted – not relatives of the tested individual. The policy stipulates that strict standards of confidentiality apply to the handling and storage of the results of genetic tests and that access to the results of genetic tests will be restricted to the insurer’s underwriters and reinsurers, and only other third parties with written authorisation of the insured individual.

These are welcome developments. However, the policy does state that insurers may request that all existing genetic test results be made available to the insurer for the purpose of classifying risk.

This is the one point that I have grave reservations about. The comments of President Clinton I think demonstrate the catastrophic impact that such a policy may have when he stated that:

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This is an edited extract from a speech given at the third Menzies Scholars Symposium on Friday 13 October 2000.



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About the Author

Senator Natasha Stott Despoja was the Australian Democrats spokesperson on Foreign Affairs, Attorney-Generals, Science & Biotechnology, Higher Education and the Status of Women (including Work & Family). She is a former Senator for South Australia.

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