Gene Issues Take Root
Genetic testing has been around for three decades, ever since doctors began identifying DNA abnormalities that are clearly visible through a microscope. However, a new wave of far more powerful and accurate tests is now coming on the market. They are both medical miracle and potential threat.
One example is the “DNA chip,” an electronic sensor that tags abnormal gene fragments with fluorescent markers, thus helping doctors identify patients likely to succumb to any of a host of genetically linked disorders, from breast cancer to heart disease.
The threat arises because as genetic tests become more accurate, the likelihood of discrimination and invasion of privacy grows.
Even five years ago the idea of genetic discrimination sounded like science fiction, but the fact is that last year, according to a survey by the American Management Assn., 30% of large and mid-size firms sought some form of genetic information about their employees and 7% used that information in awarding promotions and hiring. Last month, the Senate took a step toward a solution, approving a bill by Sen. James M. Jeffords (R-Vt.) that would restrict insurers’ ability to discriminate on the basis of genetic information. And, also last month, Rep. Ken Bentsen (D-Texas) introduced a bill in the House to bar the new financial conglomerates--typically consisting of insurers, investment companies and banks--from sharing among conglomerate members any genetic information that may be acquired.
Aside from the privacy problems, genetic testing could be prohibitively expensive. In recent years the U.S. Patent Office has given companies and universities that discovered certain genes broad ownership rights over their use. U.S. laws allow these companies to charge fees to all manufacturers who market a test that identifies or otherwise employs genes they have patented, most likely for medical uses. Costs could skyrocket as tests are combined to screen 1,000 or more genes at a time.
Last month, U.S. Patent Office Director Todd Dickinson tightened the standards his examiners use to award gene patents. The old standards allowed companies to win gene patents after merely speculating that a given gene segment could one day be used in curing a disease. The new standards rightly require companies to specify how that would happen, which should at least reduce the number of new patents. Also welcome is increased legislative oversight, including a House Judiciary Committee hearing held this week. Patents on human genes, committee members said, should not be handed out cavalierly by intellectual property lawyers working behind closed doors in the executive branch.
The hearing didn’t call for specific oversight, but the debate in Congress over such issues is good news: Legislators finally understand the imminence of genetic science’s dangers as well as promise. How far should patenting of human gene sequences go? What right do employers, insurers or mortgage bankers have to information about our susceptibility to diseases that might show up in 10, 20 or 40 years?
These are no longer theoretical questions, and if our elected officials don’t get a grip on them, the market will decide. That’s not an outcome likely to favor privacy or individual rights.
