BREAKING THE CODE

March 16, 2000
		Experts in the field debate the concept of sharing information for mapping the human genome, after this background report. The Health Unit is a partnership with the Henry J. Kaiser Family Foundation.

Online Health Special: Gene Therapy Feb. 29, 2000: A discussion with Matt Ridley, author of Genome: The Autobiography Of A Species In 23 Chapters. Feb. 2, 2000: A Univ. of Pennsylvania gene therapy program comes under fire. Dec. 8, 1999: A look at the safety of gene therapy. Dec. 2, 1999: Scientists announced the completion of a major step in breaking the human genetic code. June 16, 1999: A conversation with Free Dyson author of The Sun, the Genome, and the Internet: Tools of Scientific Revolution. The NewsHour's Health Spotlight. Browse the NewsHour's coverage of Health   The Human Genome Project The National Human Genome Research Institute American Society of Gene Therapy	SUSAN DENTZER: On the surface, the statement from President Clinton delivered on behalf of himself and British Prime Minister Tony Blair, was a commonsense call to make the road map of the human genome available to everybody. PRESIDENT CLINTON: We have a profound responsibility to ensure that the life-saving benefits of any cutting-edge research are available to all human beings. Today we take a major step in that direction by pledging to lead a global effort to make the raw data from DNA sequencing available to scientists everywhere to benefit people everywhere. I urge all of the nations, scientists and corporations, to adopt this policy and honor its spirit. We must ensure that the profits of human genome research are measured not in dollars, but in the betterment of human life. (Applause) SUSAN DENTZER: But behind the statement lay a far more intricate tale about a scientific horse race to uncover secrets about the genome: The so-called "book of life." For nearly a decade, scientists have been attempting to decipher the sequence of three billion chemical units of DNA that constitute humans' genetic makeup. Although a considerable accomplishment, that's just the first step on a long road of figuring out just what role genes play in the body, why some genes mutate and how to apply that knowledge to preventing or curing the innumerable human diseases that result. In one lane of the race to sequence the genome is The Human Genome Project. That's a consortium of university researchers funded primarily by the U.S. National Institutes of Health and a British private charity, the Wellcome Trust. In the other lane is a private company, Celera Corporation of Rockville, Maryland. It's headed by former NIH Researcher J. Craig Venter. In just two years, Celera has leapfrogged ahead of the Human Genome Project, and now appears likely to finish the complete rough draft of the genome by early this summer. For months, representatives of both camps have been trying to negotiate an agreement to cooperate and finish the sequencing job together. But those negotiations recently broke down. The reported reason was a disagreement about whether Celera could retain any rights to sell portions of the sequencing information. During a briefing at the White House, Francis Collins, who oversees the human genome project, repeatedly stressed the importance of getting the basic information about the genome into the public domain.
	No barriers to the genome data
	DR. FRANCIS COLLINS, Human Genome Project: So this exhortation, which is I think what this statement is, is that this raw fundamental data this raw data which is going to take years to sort out ought to be accessible immediately to anybody with no barriers, and the possible barriers are numerous, but the idea is get it out there as fast as you can with absolutely no restriction on how people use it. SUSAN DENTZER: After the statement was issued, Celera put out its own response. In it, Venter said he also agreed that all basic sequencing information should be made public, a point that he's made several times in recent months. J. CRAIG VENTER, Celera Corp.: Celera is an information company. It will only succeed if scientists around the world use its information. The pharmaceutical industry is already extensively using these discoveries, some of them already finding their way into major research programs. SUSAN DENTZER: But the company shed no further light on whether it was willing to call a halt to the horse race. That way, it and the Human Genome Project could proceed to the finish line together.