A Genetic Bill of Rights

How Gene Patents Are Putting Your Health at Risk

http://parade.com/articles/editions/2006/edition_11-26-2006/Intelligence_Report

A fifth of your genes belong to someone else. That’s because the U.S. Patent Office has given various labs, companies and universities the rights to 20% of the genes found in everyone’s DNA— with some disturbing results. Many U.S. labs won’t perform certain genetic tests because of patent restrictions or fees. One company that holds a license for a gene connected with Alzheimer’s has refused to let other labs work on its gene. The company that “owns” a genetic mutation for breast cancer charges up to $3,000 for a breast-cancer gene test. These alarming facts provided the background for Michael Crichton’s latest novel, Next, in bookstores this week.

“Major hepatitis C and HIV genes and various diabetes genes are all owned,” Crichton, an M.D., tells us. “Researchers working on those diseases must worry about getting permission and paying high fees.” During the SARS epidemic, he says, some researchers hesitated to study the virus because three groups claimed to own its genome. “It’s OK to own a treatment or test for a disease, but no one should own a disease,” he insists.

And that ownership has serious consequences for us. “Countries where they haven’t patented genes have better genetic testing,” says Lori Andrews, a law professor and gene-patent expert. “American women are going to France for breast-cancer gene testing.”

Plus, Crichton says, in the race to patent genes and get rich, researchers are claiming they don’t have to report deaths from genetic studies, calling them “trade secrets.” Adds Andrews: “Some companies are willing to put people at risk to have an advantage.”

“You don’t even have control over your own tissue or blood once it’s donated for research,” notes Crichton. “You have more control over what happens to your photo.”

What can the public do? Read consent forms at the hospital and doctor’s office, and specify that you don’t want your blood or tissue used for patented genetic research. And let Congress and the Patent Office know your feelings. “Gene patenting is like someone owning the alphabet and charging you each time you speak,” says Andrews. To read a Genetic Bill of Rights, see below.

A Genetic Bill of Rights

* You should have the right to refuse genetic testing and not to disclose genetic information, except in criminal cases in which there is individualized suspicion.

* You should not be discriminated against by insurers, employers, schools, courts, mortgage lenders or other institutions based on genetic tests.

* If you undergo genetic testing, you should have the right to control who receives the results.

* Your genes should not be used in research without your consent, even if your tissue sample has been made anonymous.

* Your genes should not be patented.

From Lori Andrews, a professor at Chicago-Kent College of Law, who chaired the federal ethics advisory committee to the Human Genome Project.