ASMR medallist warns of DIY genetics

As the prospect of 'genetic passports' and DIY genetics tests grows more imminent, regulators need to get up to speed with scientific developments, this year's Australian Society for Medical Research medallist, Prof Mary Hendrix, has warned.

Hendrix, who is scientific director and president of the Children's Memorial Institute for Education and Research at Northwestern University in the US, has been touring Australia for the ASMR's Medical Research Week, speaking about some of the ethical challenges that have surfaced in the wake of the human genome project.

Hendrix said she believed that in the future, all newborns -- at least in developed countries -- would be given a genetic passport soon after birth that would provide information about their genetic predisposition to disease.

Although the idea of being able to predict and prevent disease from birth in such a personalised way is very appealing, Hendrix cautioned that the regulatory side of things needed to catch up.

"I think the use and interpretation of this genomic information is very important," she said. "We have to start thinking right now about the guidelines that we're going to use, and the ethical and legal standards that we are going to establish."

Hendrix has concerns about the development of do-it-yourself genetics tests that she fears may soon become available over the counter in pharmacies.

"What we have heard is that on the internet there are different groups who offer genetic testing to make sure you are getting proper nutrition," she said. "There is also genetic testing for different diseases, and we understand there is a paternity testing genetic kit."

But if such tests had anything in common, Hendrix said, it was that none of them had been regulated or standardised, so their reliability could not be gauged. Most importantly, she said, there were no controls over how the information they generated would be used or misused, or interpreted.

Hendrix pointed out that just because a test determined that someone was genetically predisposed to a particular disease, it did not necessarily mean that person would develop that disease. "If these kits are giving out false positives or false negatives, I really think this is a critical time, and it needs monitoring," she said.

Hendrix, a former president of the Federation of American Societies for Experimental Biology (FASEB), prepared for her visit to Australia with some high-level consultation -- from US National Human Genome Research Institute director Francis Collins, who visited last year for the International Congress of Genetics.