Washington Editor

WASHINGTON - Scientists who testified before a House subcommittee on Thursday offered their support for legislation in the Senate that would make it illegal to discriminate on the basis of genetic information.

Naturally, such legislation would be important to people such as Craig Venter, president of the J. Craig Venter Science Foundation and former president and chief scientific officer of Rockville, Md.-based Celera Genomics, and Francis Collins, director of the National Human Genome Research Institute of the National Institutes of Health. The two were among a panel of five scientists who testified before the House Energy and Commerce Subcommittee on Health. The group was invited to discuss the Human Genome Project, but the conversation, led by subcommittee Chairman Rep. Michael Bilirakis (R-Fla.), quickly turned to more pressing issues of the day, including genetic discrimination.

Venter and Collins, who often have been characterized as adversaries in their individual quests to map the human genome, said they worked together to lobby support for genetic discrimination legislation.

On Wednesday, the Senate's Health, Education, Labor and Pensions Committee approved legislation that would bar employers and insurers from discriminating against a person based on genetic makeup. Senate Majority Leader Bill Frist (R-Tenn.) said the Senate would take up the vote in June.

Meanwhile, over in the House, such legislation has been toyed with over the years. Members of the subcommittee, including Bilirakis, Lois Capps (D-Calif.) and Sherrod Brown (D-Ohio), said they would support such a measure.

And this is key to Venter and Collins, who have spent years decoding the human genome in the private and public sectors, respectively.

Collins brought the subcommittee up to date on the Human Genome Project, saying that an international consortium of scientists had announced April 14 (Collins' birthday) that 99 percent of the genome's gene-containing regions had been sequenced to an accuracy of 99.99 percent. The project, which began in 1990, was completed two years ahead of schedule and $400 million under budget, he said.

"We're at the end of the beginning," Collins said. "Now we have to figure out how it all works."

Venter, who resigned from Celera a year ago, opened a lab in conjunction with The Institute for Genomic Research, the Institute for Biological Energy Alternatives and The Center for Genomic Research, all not-for-profits founded by Venter, to work on sequencing genomes quickly. Venter believes the day will come when babies will leave the hospital with their in-depth genetic makeup on DVD. (See BioWorld Today, Aug. 19, 2002.)

And these advances in science will help in producing individual medicines as opposed to "one size fits all" health care, he said.

The downside, of course, is that people may not want to know if they are predisposed to a disease like Alzheimer's if there's nothing to cure or treat it, Collins said.

Ironically, diseases like Alzheimer's, Parkinson's, diabetes and heart disease may find therapies or cures in stem cell research. The irony is this breakthrough research may be stifled by Congress.

When asked if limits set by the White House and Congress on this research is cause for concern, Collins, a government employee, avoided answering the question, but Venter sure didn't.

"It is very dangerous when we start to set limits on basic science," Venter said. "People are against cloning for the wrong reasons. I'm against reproductive cloning and I don't know of one reputable scientist who wants to clone a human. There are headline seekers out there who aren't doing real science."

Venter said there appears to be a lack of understanding among government officials and the public about what stem cell research entails and the importance of it. Unfortunately, he said, this lack of understanding could put the U.S. at risk of losing its spot as a world leader in research.

Legislation is floating around the House and Senate on either side of the stem cell debate.

In the Senate, Sam Brownback (R-Kan.) and Mary Landrieu (D-La.) introduced legislation (S.245) that would ban all cloning, while Dianne Feinstein (D-Calif.) introduced legislation that would ban human cloning but allow therapeutic cloning. (See BioWorld Today, Jan. 9, 2003, and March 20, 2003.)

Over in the Republican-held House, a sweeping ban on all cloning (HR 534) passed in a 241-155 vote. Introduced by Reps. Dave Weldon (R-Fla.) and Bart Stupak (D-Mich.), the legislation would make it illegal for the U.S. to import medical therapies created from cloned embryos. (See BioWorld Today, March 3, 2002.)

Under President Bush's stem cell policy, the NIH can award grants to researchers studying up to 70 lines that were in existence when the policy was announced Aug. 9, 2001. (See BioWorld Today, Aug. 13, 2001.)

Several scientists have complained that the approved lines are not accessible to researchers.