Missing the mark

Whether genome scans available on the Internet can really give you the right answer remains controversial in the US. Quanjing

Some people who want their genome scanned are only worried about how their hair will look when they get old. Others hope for answers to anxious questions about the future of their health, namely whether or not they are likely to contract a serious disease or die young.

All of this information is found in the subjects' genetic code. To get an understanding of it, people in the United States are turning to increasingly popular genome scans offered on the Internet. It's easy to order a test, which involves sending in a small sample of saliva and waiting for the results.

What customers then have access to is entirely open to interpretation, experts say and the customer is often led down the wrong track. Skeptics feel that the idea that genetic analysis can be achieved in a mouse click, is not fully developed.

In the US there are 35 companies offering such tests on the Internet, costing up to $2,500. Customers primarily want to find out more about their hereditary predispositions and about possible genetic diseases they might have inherited.

To order a test, the customer first has to register on one of the websites. He or she then receives a test kit in the mail and sends in the saliva sample in a vial. A few weeks later the customer can read the genetic analysis at the company's website. As no specialist is on hand when the customer views the results, anything can be read into them and the services have prompted a lot of skepticism.

The genetic information available in today's genome scans is limited, or in some cases not medically useful, a recent forum in Washington DC was told by Robert Green, professor of neurology, genetics and epidemiology, Boston University Schools of Medicine and Public Health.

The information could cause the consumer to be unnecessarily alarmed or worried about the future of his health. Green conducted his own personal experiment. He sent saliva samples to two different genome scanning companies. One set of results showed that his risk of a heart attack was very high ... the other showed the opposite, he said.

Nevertheless, there appears to be an ever-increasing demand for genome scans offered on the Internet. Reliable figures are not available because the companies are not required to reveal the number of customers they have.

Sara Huston Katsanis, a consultant with the Genetics & Public Policy Center, which follows and analyzes the public debate on genetic technology in the US, said this year alone five new genome scan companies had been founded, indicating that the scans were becoming a societal trend.

Half of the 50 US states plus Washington, DC, allow genome scans to be offered over the Internet, says the Genetics & Public Policy Center. However, California recently struck a hard line, demanding that companies suspend sales until they have proved that the genome scans do not break current laws. Companies must show that they do not promise too much in their advertisements, according to the American Society for Human Genetics.

The two market leaders, 23andMe and Navigenics are persevering in the conflict with the state of California. Just a few months ago they each received a state license, granting them the right to continue offering genome scans.

They pointed out that they offered no medical examinations, rather a personal genetic testing service, the New York Times reported. Aside from that, they argued, consumers have a right to know what's in their own DNA.

The companies stressed that people have the right to know their own genome, Green was quoted as saying in USA Today.

"I think that's absolutely true," he added. "The counter-argument is what if people misunderstand or in some way the information is misrepresented?"

The company, 23andMe, has been offering Internet-enabled genome scans in Germany, Austria and Switzerland since the beginning of the year.

"In Germany and Austria the procedure would be illegal, but because the company is based in California, it is unlikely that it will be prosecuted," Helge Torgersen, a biologist, said on Austrian television.

Science is developing rapidly, which is not only highly interesting for researchers, but for everyone who can profit from the applications of the new technology, said Dietrich Stephan, co-founder of Navigenics.

The advances make responsible treatment of the analysis necessary, and that's another area for business development.

Stephan said his company was participating in a study to determine whether people understood the genetic information they received and was analyzing how they dealt with it.

"Genetic information has a special power," said Green. "It has a feel of fate about it, a sense of inevitability, the sense that, 'Oh, you are marked'."

DPA

(China Daily 10/22/2008 page19)