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Company Provides "Free" Access to Human Gene Data

From the WebMD Archives

Dec. 8, 2000 -- The marriage between science and commerce has often been a stormy one, but the parties appear to have reached a shaky truce on at least one issue: the debut publication of a working draft of the human genome, the blueprint for human life.

In keeping with scientific publishing tradition that calls for study authors to make their data available for scrutiny, the journal Science and Celera Genomics Corp. of Rockville, Md., have reached an agreement that will allow Science to publish the draft of the data.

But at the same time, the agreement bucks tradition by only making the data available for use to certain people, keeping Celera's commercial interests intact, say spokespersons for both organizations. This part of the agreement is controversial and has some researchers up in arms.

Specifically, Celera -- which has come up with its own translation of the human genetic code and profits from the sale of genetic data and related services to the drug industry and other research organizations -- has agreed to make its version of human genetic sequence data available free to other researchers only.

The company will allow academic -- but not commercial -- researchers to download a limited amount of information without charge. They can have access to more data, provided that they pledge in a formal agreement not to redistribute the data. Researchers will even be free, the parties say, to seek patents for discoveries based on the data.

The catch is that the information will stay in Celera's control and will not be released into GenBank, the publicly funded and freely accessible database of genetic information that includes information about the genetic libraries of yeasts, bacteria, fruit flies, mice and men, among many other organisms. By comparing genetic maps between species, researchers can gain insights into the workings of specific genes and how their functions have changed or have been preserved throughout evolution.

"It has been the Genome Institute's and the Human Genome Project's policy to make data from the human genome sequence rapidly and freely accessible," Kathy Hudson, PhD, assistant director of the National Human Genome Research Institute, or NHGRI, tells WebMD.

"It has been our practice that a sequence is deposited into a publicly available database, namely GenBank ... Our sequence has been out there and available as it has been generated, and we have done so based on the belief that the genome sequence is fundamental information and that we would like to see all researchers with an Internet connection able to have unrestricted access to that information," says Hudson.

The Human Genome Project, a consortium of 16 publicly funded research centers in the U.S., Europe, and Asia, is Celera's major competitor in the race to sequence and publish the human genome, although the company and the consortium have pledged cooperation and collaboration.

According to NHGRI director Francis Collins MD, PhD, human genome data from GenBank has allowed researchers to identify genes responsible for hereditary deafness and an often-fatal disorder called cerebral cavernous malformation. Collins predicts that in five to 10 years, researchers will uncover the genetic secrets of common illnesses such as diabetes, heart disease, schizophrenia, multiple sclerosis, asthma, and many common cancers.

It's not surprising, then, that some geneticists are concerned that fragmentation of the data will hamper scientific research, which has always relied on collegial relations among researchers and the free and open exchange of data and ideas.

"Science moves ahead best when everyone has the most access to information and can share it" and anything that hampers that process "is not going in the right direction," genetics researcher W. Richard McCombie, PhD, tells WebMD. McCombie is associate professor at Cold Spring Harbor Laboratory in Cold Spring Harbor, N.Y.

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