Genome Introduces Fears As Well As Hope

June 26, 2001 -- The drafts that researchers finished of the human genome introduce a wealth of vital information for medical researchers.

But some fear there may also be such a thing as too much information.

“Just as we fought major battles over social, racial and women’s rights in past decades, these will be the years we battle against genetic discrimination,” said Jeremy Rifkin of the Foundation for Economic Trends and author of The Biotech Century.

No Genetic Privacy

The human genome in its finished form will offer a detailed guidebook to the human body. Most of this draft is standard copy — every human being shares about 99.9 percent of the same genetic make-up. The remaining 0.1 percent is what makes each person unique. And some fear that’s where companies or individuals may find ways to discriminate.

“[It] is virtually impossible to achieve full medical privacy,” Craig Venter recently told a “High-tech summit” held by the Joint Economic Committee of the House of Representatives and the Senate. Venter is head of Celera Genomics, Inc. which was one of two teams of researchers working on the genome drafts.

“Accepting this fact highlights our need for legislation prohibiting discrimination on the basis of genetic information.”

One long-term goal of genomic research is to create a genetic I.D. of every individual, explains Rifkin. People will then be able to use their genetic portraits to understand what kind of health risks they face and the treatments that will work best for them.

But, as research has been showing, genes offer much more information than disease vulnerability. They also signal for traits like hair color, obesity, vision, even certain kinds of personalities.

“We haven’t found any behavior that has no genetic influence yet,” says Greg Carey, a psychologist at the University of Colorado at Boulder.

The fear is that companies may some day be able to access this kind of genetic information. Then executives may pick and choose candidates simply by screening for preferred genetic traits. Groups such as the Coalition for Genetic Fairness also worry that insurance companies may deny individuals coverage based on their genetic information.

“Increasingly agencies are going to want genetic profiling for all kinds of things,” says Rifkin. “We need to protect ourselves from that.”

Last winter, President Clinton signed an executive order that prohibits every civilian Federal Department and agency from using genetic information while hiring or firing. And congress is working on legislation to extend those protections to people working in the private sector. But, so far, the bills in both the House and Senate have made little progress in the legislative process.

Designer Babies

Not only may agencies select for genetic traits, some fear parents may start to as well in what might be considered the most extreme application of genetic information — designing children.

Although scientists stress that this capability is still in the far future, we may someday be able to signal for select genes in unborn children. Parents could also begin to screen fetuses while still in the womb and then decide whether or not to abort a pregnancy. This possibility is particularly threatening for minorities such as gay people and the disabled.

“I think that science could go a little far,” says George Kerford, Chairman and Chief Executive Officer of the World Association of People With Disabilities. “There are people out there born with disabilities who are sharper than sharp. We would miss out on a lot if we screened against them.”

Venter, however, did point out that at least one kind of discrimination based on genetic information may not be possible. He said that scientists studying the human genome maps were unable to tell one ethnicity from another.

“What we’ve shown is the concept of race has no scientific basis,” he said.

Gene Profits

A more immediate ethical dilemma that scientists face in the coming years is deciding how much of the genetic code should be made public and how much companies should have the right to patent to fund their research.

The public consortium has made all of its data available on a public database. Venter of the Celera corporation says his company’s information will be available to academic scientists on a Web data base after he and his colleagues publish a paper on the work in the fall. He explains he plans to make his company profitable by helping investors understand genetic information.

Celera has filed for about two dozen patents on the identification of genes that signal for unique traits. Individuals working within the public consortium have also filed several patents on so-called unique genes.

Brigid Quinn of the U.S. Patent Office explains that requirements for gene patents have become more rigid in recent years. She says that applicants must completely isolate a gene and then demonstrate that it has a “credible, substantial and credible” use.

Despite these higher standards, applications for genetic patents have skyrocketed. Quinn reports that applications have increased more than 15 percent over previous years — 10 times higher than patents for other technologies.

“Applications have been coming in at a rapid pace,” she said. “We don’t even have the personnel to keep up.”

That companies are buying up rights to specific genes worries Rifkin.

“In the next 10 years or so companies will own patents to all the genes in the human body,” he says. “That’s a terrifying thought.”

Gene Treaty?

Rifkin has suggested creating a so-called Gene Treaty. The document, he says, would be modeled on the Antarctic Treaty and would essentially deem all genetic information a shared resource for all nations. He says companies could still make profits by patenting the processes they used to find genes, rather than patenting the genes themselves.

But George Annas, director of the Law, Medicine and Ethics program at Boston University School of Medicine is skeptical.

“Companies won’t like it,” Annas says. “The question is who would run such an organization or a gene data bank.”

Both President Clinton and Prime Minister Tony Blair indicated that they support measures that would ensure genetic information remains public. In Monday’s ceremonies, Clinton also suggested that the U.S., Great Britain and other countries share a “partnership” to deal with the implications of the new genetic information.

In light of all the concerns associated with this new well of genetic information, supporters of the research stress that the benefits of the new drafts, such as improved screening for diseases, personally tailored medication and a better scientific understanding of the human body, should not be overlooked.

“Some have said the human genome will diminish humanity by taking the mystery out of life. Nothing could be further from the truth,” Venter said, adding that this information will “keep poets and philosophers inspired for millenia.”