BETWEEN THE LINES: Human Genome Project

By Scott Harris, Between the Lines. Posted July 17, 2000.

Two groups of scientists from the government-funded Human Genome Project and the private company Celera Genomics recently announced, with great fanfare, the effective completion of decades-long research to decipher the human genetic code. With this knowledge comes the possibility of dramatic new treatments for serious diseases such as cancer and diabetes.

While the benefits of this research will no doubt contribute greatly to improving the quality of life for many, the potential for abuse is also part of the picture. Biotech corporations are already privatizing for profit essential elements of the human genome. The possibility exists that new forms of genetic discrimination may result from the knowledge of an individual's predisposition for disease, intellectual potential and physical attributes.

Between The Lines' Scott Harris spoke with James Love, director of the Washington, D.C.-based Consumer Project on Technology, who examines human genetic research and the prospect that this knowledge could be misused by those interested only in material gain.

James Love: Well, I think the joint announcement was largely a public relations thing that was designed to position the two groups that shared the microphone to (try to win the) Nobel Prize in science. In essence, it was premature. They really hadn't finished the work; they've described their work as a rough draft. All that said, it's an important thing. We're entering an era where all sorts of new science will be possible. One of the dramas over the mapping of the gene has been, not only can it be done -- which I think we've known for several years that we can do it -- but it's a question of who is going to own the intellectual property rights. That's one of the important issues that's going to come up. The other things include what is going to be the social response to some of the ethical issues that are raised by mapping the gene.

In terms of the commercial application and the potential for profit here, explain to our listeners what the "gold rush" is all about. What's the situation on corporations patenting life itself here?

James Love: There's been lots of patenting for a long time. This is just sort of an order of magnitude shift in terms of what's going to happen. The typical debate in the patent community is whether you can patent something if you don't know what it does, the so-called utility issue. What Celera Genomics President Craig Venter and a lot of others are trying to do is to lower the standards of patents. So that basically if you find something, you can somehow become the owner and as some people say, you can own a whole disease if your patent is broad enough.

What's happening right now in the academic community is people are being inundated with letters from lawyers saying their research infringes upon some patent that's outstanding in the biotech community and they either have to pay up big bucks, or they have to sign over the rights for any future discoveries, or the researchers have to stop doing it or they'll be sued.

It's caused a lot of problems within the academic community. There's a lot of research which is not going forward now because of the fear of litigation.

Could you address the whole issue of privacy, as there is a fear that with this new technology there is the potential to analyze someone's genetic code and discover a particular physical weakness, a predisposition for various diseases that could result in someone losing out in the job market or someone not being placed in a particular college? The possibilities are pretty endless.

James Love: The privacy dilemmas are just huge and a lot of it is driven by the health insurance issue because the U.S. doesn't have national health insurance. Because employers are expected to pay for the cost of their own employees' (insurance policies), they have an incentive not to hire people that have risks in terms of expensive medical procedures. And so, it's not only about you, it's also about other members of your family.

So, there's a lot that genetic information can tell us in addition to whether or not you might be diabetic, or have asthma, or get cancer or something like that. There's people looking at the "gay gene" to see if you're predisposed to be homosexual or commit crimes. I don't know how well-grounded some of these types of research are, but whether they're accurate or not, the fact that some people believe (them to be valid) presents risks.

What's the role of government in establishing a code of ethics, guaranteed public access to various health therapies, and some boundaries in this new genetic frontier?

James Love: I think in terms of access to medicine it's pretty obvious that the U.S. government has to put on its books -- like a lot of other countries have -- legislation which gives government the power to issue compulsory licenses for patents in the areas for which there is an abuse of patent's rights.

The U.S. government can do that right now through an anti-trust procedure. I think because it's so expensive to engage in litigation the U.S. government should really have a more simplified administrative procedure.

They also have to protect academic research. There's too much harassment right now of people who work in academia, who are just trying to do research not for commercial purposes, but just to figure out the next important discovery. Those are pretty straightforward fixes. I think the more complicated thing for society will be to deal with the issues of discrimination and the ethical restrictions of what you're permitted to do.

The current administration has been so solicitous of business, they've been so anxious to make businessmen happy and say, "We're on your side," that they really haven't permitted much of a debate to take place. There's all these really interesting issues and there's nobody in the Clinton Administration right now -- and not on the Republican side either -- that's been speaking out on these issues.

Scott Harris is WPKN Radio's public affairs director and executive producer of Between The Lines.

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