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

We ... know that one of the main reasons women refuse genetic testing for susceptibility to breast cancer is the fear that the insurance companies may either deny them coverage or raise their rates to unaffordable levels.

If such information was required by insurance companies I fear that Australian women will deny themselves testing and further examination. If one more woman feels comfortable about taking a genetic test for breast cancer then I think my Bill would be proven worthwhile.

I disagree with IFSAs argument that responsible industry self-regulation is more likely to serve the interests of consumers and policy holders, though I do acknowledge that this is a significant step forward in a domestic policy climate that is receiving no direction from Government.

With the absence of leadership from the Government on the issue (an issue which some Government offices still deny exists) IFSA must be commended for attempting to grapple with this complex issue.

I hope that my Bill has, in some way, added to the public and legislative debate regarding the need for legal protection against the misuse of genetic information and therefore is a step in the wider evolution of privacy rights in Australia.