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Official at HapMap Project Expresses Doubts On Whether Click-Wrap Agreement Will Work

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An official within the International HapMap Project has questioned whether the click-wrap license agreement unveiled last December would succeed.

The pronouncement is believed to be the first time that a consortium member has publicly questioned a portion of it.

“I think whether [the click-through agreement] works or not remains to be seen,” Ellen Wright Clayton, a co-chair of the HapMap’s ELSI Committee, said during her presentation at a two-day conference on genomics and the law at Louisiana State University last week. Clayton is also the director of the Genetics and Health Policy Center, and a senior fellow at the Institute for Public Studies at Vanderbilt University, in Tennessee.

“A lot of very high-power intellectual property lawyers spent a lot of time thinking about it, but you never know when you draft these agreements whether they’re actually going to stand up,” she later told SNPtech Pharmacogenomics Reporter.

She stressed that she does not believe the language in the agreement is too narrow, or that the rules themselves are too loose.

More than two years after the project was conceived, and 14 months after it was formally launched, officials of the HapMap Project in December promised researchers that “some” of the HapMap data will be “released quickly” and with “no conditions,” while other data “can be accessed quickly” by scientists who agree to certain restrictions.

The project said it “is committed to rapid and complete data release, and to ensuring that project data remain freely available ... at no cost to users,” participants wrote in the Dec. 18/25 issue of Nature. The article also reiterated the rationale behind the HapMap Project.

As SNPtech Pharmacogenomics Reporter wrote in December [see 12/18/2003 issue], researchers wishing to obtain certain genotype data from the HapMap Project website will need to affirm they will “not take any action (including patenting) that would restrict the access of others to the data within it or share the data with anyone who has not read these terms and conditions and agreed to them.”

Specifically, information in the database about SNPs, SNP assays, and allele and genotype frequencies may be freely downloaded, according to the project’s website. However, users will be required to complete a click-wrap license agreement when they want to view data about the genotypes related to those SNPs. These data will be “gradually released,” according to project organizers. “Once there is a sufficient density of genotype information in a chromosome region to derive haplotype information, the derived haplotypes and the underlying individual genotypes in that region will also be publicly released to dbSNP without restriction,” the project organizers said.

David Altshuler, of the Whitehead Institute for Biomedical Research, and a leader in the HapMap Project, said the main rationale behind the data-release policy was to prevent individuals from using the data to flesh out — and patent — their own gene or mutation maps.

“That was something that the funders and the participants felt that, if this public effort was to go forward with the goal of making the information freely available, it would be an unfortunate consequence if someone else scooped up the data and patented it, and then tried to restrict use by the public, who are meant to be the beneficiaries,” Altshuler told SNPtech Pharmacogenomics Reporter in December.

“The intention of this policy is just to say, ‘If you want to use the data, go ahead and do anything you want with it as long as you don’t restrict any one else’s use of it,” he said. When “a sufficient amount of the data” have been deposited into the public domain, which organizers said will likely happen at the end of 2005, “it will be very unlikely that it would be patentable.”

“This licensing approach is not intended to block the ability of users to file for IP protection on specific haplotypes for which they have identified associated phenotypes, such as disease susceptibility, drug responsiveness, or other biological utility, as long as public access to, and use of, the data produced by the HapMap Project is preserved,” the project stressed on its site.

— KL

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