Public meeting: DNA shampoo? Diet and exercise regimes tailored to your own genetic makeup? Cosmetics blended to address your particular ‘wrinkle genes’? A DNA test to determine which sport best suits your child? DNA tests available on the internet to calculate your genetic risk for breast cancer, diabetes or Alzheimer’s disease?
This is no longer the stuff of science fiction—rapid advances in genetic science and technology are greatly expanding the range of DNA tests available, and dramatically reducing the costs. While genetic testing has been the preserve of medical specialists and major teaching hospitals, private laboratories are now advertising their services directly to consumers via the Internet, with costs ranging from $250 for ‘dermagenetics’ to $300,000 for a fully sequenced personal genome with 3.2 billion bits of genetic information.
The Australian Law Reform Commission (ALRC) and the National Health and Medical Research Council (NHMRC) joined forces to explore these issues at a free Public Meeting in Sydney on 7 August 2008: ‘Direct-to-consumer DNA testing: marketing hype or medical breakthrough?’
These developments were foreshadowed by the ALRC in its landmark 2003 report, Essentially Yours: The Protection of Human Genetic Information in Australia. According to ALRC President Professor David Weisbrot, this area is moving even faster than expected: “Just five years ago, no one was advertising medical DNA testing over the internet. However, there are now over 30 labs offering about 40 tests directly to consumers in the US, and there are 4-5 labs doing this here.
“To the extent that the soft end of this just involves new fashions and fads, then maybe community education, consumer law and ‘buyer beware’ will be sufficient. Are these so-called ‘lifestyle DNA tests’ the 21st century version of the ‘mood ring’?
But more importantly, many of the DNA tests being offered have serious implications, since people will rely on them to make critical decisions about their health and well-being. So, do we need tougher laws and more stringent regulation by government authorities?”
Professor Ron Trent of Sydney University, Chair of the NHMRC’s Human Genetics Advisory Committee, stated: “We have serious concerns about DNA tests being offered to individuals without the advice of a health professional. And are these cleverly marketed tests actually based on real medical research? Do these private overseas labs meet our high ethical and technical standards? And who will interpret the complex results of a DNA test, or provide the necessary counselling?”
Prof Weisbrot added, “We want community participation in developing sound policies for regulating this area in the public interest. We will be using the feedback we receive at this Public Meeting to provide advice to Government which will help shape these policies into the future.”
This free Public Meeting was hosted by Bernie Hobbs of ABC-TV’s New Inventors. Speakers will include Professor Weisbrot, Professor Trent, and consumer law expert Vijaya Nagarajan (Macquarie University), with lots of opportunity for public discussion.