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8-Humans: Australian expert calls for proper regulation on human gene testing

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TITLE:  Gene test 'horror stories' worry lawyers
SOURCE: Sydney morning Herald, Australia, by Deborah Smith and Sarah 
DATE:   November 15, 2001

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Gene test 'horror stories' worry lawyers

Safeguards must be introduced to prevent improper use of genetic 
information in employment, insurance and for commercial gain, the 
Australian Law Reform Commission has warned. The commission's president, 
David Weisbrot, said yesterday that genetic science and DNA testing was 
advancing rapidly. "Ensuring proper regulation of this area should leave 
people feeling more secure in making better-informed choices about their 
health care without suffering adverse consequences in other areas of their 

Professor Weisbrot was launching a 500-page consultation paper, the first 
step in a public inquiry by the commission and the Australian Health Ethics 
Committee into protecting human genetic information. It finds that genetic 
testing is covered by a "patchwork" of federal and state laws, ethical 
guidelines, complaints-handling authorities and funding bodies. Professor 
Weisbrot signalled that the inquiry, due to be completed in June, would not 
recommend introducing laws to cover genetic information. "It may be more 
desirable to amend existing legislation," he said.

New industry codes of practice were also likely and the inquiry might also 
recommend establishing a new body, similar to those in Canada and Britain, 
to advise the government on human genetics. Professor Weisbrot said while 
there was almost no regulation of genetic testing by employers here, 
Australians had yet to experience the "horror stories" of countries such as 
the United States and Britain. A US railway company introduced 
surreptitious testing of workers for genetic predisposition to carpal 
tunnel syndrome last year, but the program was withdrawn after action by 

In Britain, air crew were routinely tested for the gene associated with 
sickle cell anaemia, more common in people of African descent, raising 
concerns about racial discrimination.

An Australasian survey of 700 people published last year identified 43 
cases of alleged discrimination on the basis of a genetic test. Most had 
been denied insurance or charged increased premiums, three said they had 
been sacked or demoted because of a genetic predisposition to a brain 
disease, and two others were asked to have genetic tests when applying for 

Professor Weisbrot praised a Victorian agreement between the insurance 
industry and the Murdoch Children's Research Institute, which will 
genetically test 30,000 young Victorians for a treatable but potentially 
life threatening blood disorder, haemochromatosis. Insurers have agreed not 
to discriminate against people who test positive. "These are the sort of 
creative solutions we are looking to try to develop," he said.

The chairman of the Australian Health Ethics Committee, Kerry Breen, said 
the inquiry wanted to hear whether people felt supervision of genetic 
research by research institute ethics committees was a sufficient safeguard.

Another concern was the commercialisation of medicine, which could place 
pressures on doctors to use DNA samples for purposes other than those 
disclosed at the time of collection.

DNA dilemmas: what the inquiry hopes to tackle
Can I be forced to take a genetic test by my employer?
Can I be sacked if a test shows I have a predisposition to certain diseases 
or conditions?
My genetic test shows I have Huntington's disease - must I disclose the 
result to my life insurance company?
The gene is likely to run in families; will my children be barred from 
gaining life insurance?
Can I be barred from access to services (schools or nursing homes) or 
participation in certain sports (boxing) on the basis of my genetic code?
I have tested positive for the breast cancer gene so it's possible my 
sisters also have it. I don't want to worry them unnecessarily.
Do they have the right to know?
Can my GP tell them without my consent?
Can I be sure unauthorised people cannot access my genetic samples if I 
take part in research or a screening program?


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