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The Role of Scientific and Technical Data and Information in the Public Domain: Proceedings of a Symposium (2003)
Board on International Scientific Organizations (BISO)

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. "28. The Single Nucleotide Polymorphism Consortium." The Role of Scientific and Technical Data and Information in the Public Domain: Proceedings of a Symposium. Washington, DC: The National Academies Press, 2003.

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world alight was the fact that efforts were made to close down the public-domain activity. There was a meeting at Cold Spring Harbor, during which Dr. Craig Venter told the National Institutes of Health to give up their human sequencing program and focus on the mouse.

By pure chance, the Wellcome Trust was considering a proposal to double the financing available to the Sanger Center, now the Sanger Institute, to sequence the human genome. The governors approved the award, and John Sulston and I flew to Cold Spring Harbor to announce the news to the assembled scientists and to talk to the funding agencies. As we all know, the Human Genome Project survived and there was one project in the public domain and one in the private domain. But you need to ask yourselves, what would have happened if the Wellcome Trust had not by that time become reasonably wealthy and if there had not been a public-domain Human Genome Project. Would those data now be available to scientists around the world?

There were negotiations to try to bring the private and public programs together. There were exchanges of letters. Finally, because time was pressing and we wanted to move forward, the Wellcome Trust released a letter that in essence stopped the negotiations. Celera did not react very well to this, and a cartoon was published in Nature purporting to show that the gene of human aggression had at last been isolated. The following week, there was a joint statement issued by the White House and 10 Downing Street, which included a declaration supporting the release of data. Unfortunately, it was misinterpreted, particularly by the financial press. It had an effect that had not been foreseen, which was the suggestion that it was inappropriate in any way to use the patent system to capture intellectual property (IP) coming out of genome research, which was not the intent. There was also a simultaneous announcement by both camps of completion of a working draft. I want to make it clear that the Wellcome Trust is not opposed to the appropriate patenting of IP, I just wanted to mention that, whereas we regard the human sequence as something that itself should not be patented, the proteins derived from that and therapies to interfere with that are entirely appropriately protected by the various IP rules.

Each of us contains three billion nucleotides in our DNA. Each of us is extremely different, yet our DNA is 99.9 percent the same. But that means there are three million differences, and those differences will be distributed throughout the three billion nucleotides. If you want to do a bit of mathematics as to what the various combinations can be, you can see that it is truly astronomical and explains why we are all so different. As a species we are more closely related through our DNA than any other species on the planet, and we understand, or at least we have some reasonable understanding, of why that is so.

These are some of the reasons why SNPs were seen to be important by the pharmaceutical industry. They in some way will reflect our different susceptibility to disease, our different susceptibility to the action of drugs. If you can understand that information with respect to whom is susceptible, for example, to diabetes or hypertension, you will be able to segment the population, advise on different changes in lifestyle, and develop appropriate drug therapies. There are many other uses. As such, industry recognized the need to understand the variation in the human genome, the SNPs. They could see that if these could be mapped out and we could understand where they were and correlate them with disease, that would be very powerful. GlaxoSmithKline estimated that it would cost approximately $250 million to get a reasonable first map of SNPs. Even for a large company like Glaxo, $250 million is a large portion of the research budget. Multiply that by the fact that each pharmaceutical company would need its own SNP map and you can see why, from a purely economic reason, industry was interested in somehow mitigating those expenses. So they all got together to explore whether a combined effort would enable them to get a SNP map cheaper, or share the cost. It was only later in the process that the possibility of public funds via the Wellcome Trust became a possibility.

One of the reasons that putting the data into the public domain was appealing was, if you get a cabal of companies together to produce information that they will share only among themselves, you can run afoul, particularly in the United States, of antitrust legislation. So we developed a model for a not-for-profit company, a 501(c)(3) in the United States, where the partners would join, agree to the workings of the organization, work out a work plan, and fund it.

The companies involved were not only the major pharmaceutical companies in the United States and Europe, but also IBM and Motorola. Motorola wanted to put SNPs on chips, exactly what is now happening. The mission of the consortium was to gather these data to serve the medical community, the life sciences community, and the

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Front Matter (R1-R12)
Session 1: The Role, Value, and Limits of Scientific and Technical (S&T) Data and Information in the Public Domain - 1. Discussion Framework (1-9)
2. The Genius of Intellectual Property and the Need for the Public Domain (10-14)
3. Intellectual Property - When Is It the Best Incentive Mechanism for S&T Data and Information? (15-18)
4. The Economic Logic of “Open Science” and the Balance between Private Property Rights and the Public Domain in Scientific Data and Information: A Primer (19-34)
5. Scientific Knowledge as a Global Public Good: Contributions to Innovation and the Economy (35-51)
6. Opportunities for Commercial Exploitation of Networked Science and Technology Public-Domain Information Resources (52-55)
7. Education (56-59)
8. Earth and Environmental Sciences (60-64)
9. Biomedical Research (65-70)
Session 2: Pressures on the Public Domain - 10. Discussion Framework (71-86)
11. The Urge to Commercialize: Interactions Between Public and Private Research and Development (87-94)
12. Legal Pressures in Intellectual Property Law (95-98)
13. Legal Pressures on the Public Domain: Licensing Practices (99-103)
14. Legal Pressures in National Security Restrictions (104-108)
15. The Challenge of Digital Rights Management Technologies (109-116)
Session 3: Potential Effects of a Diminishing Public Domain - 16. Discussion Framework (117-124)
17. Fundamental Research and Education (125-128)
18. Conflicting International Public Sector Information Policies and their Effects on the Public Domain and the Economy (129-132)
19. Potential Effects of a Diminishing Public Domain in Biomedical Research Data (133-138)
Session 4: Responses by the Research and Education Communities in Preserving the Public Domain and Promoting Open Access - 20. Discussion Framework (139-160)
21. Strengthening Public-Domain Mechanisms in the Federal Government: A Perspective From Biological and Environmental Research (161-164)
22. Academics as a Natural Haven for Open Science and Public-Domain Resources: How Far Can We Stray? (165-168)
23. New Legal Approaches in the Private Sector (169-174)
24. Designing Public-Private Transactions in the Private Sector (175-179)
25. Emerging Models for Maintaining Scientific Data in the Public Domain (180-186)
26. The Role of the Research University in Strengthening the Intellectual Commons: the OpenCourseWare and DSpace Initiatives at Massachusetts Institute of Technology (187-190)
27. Corporate Donations of Geophysical Data (191-193)
28. The Single Nucleotide Polymorphism Consortium (194-197)
29. Closing Remarks (198-200)
Appendix A: Final Symposium Agenda (201-205)
Appendix B: Biographical Information on Speakers and Steering Committee Members (206-214)
Appendix C: Symposium Attendees (215-224)
Appendix D: Acronyms and Initialisms (225-226)