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Morella, Peers Briefed on Genome Project Developments

Exciting scientific developments in the Human Genome Project were showcased during a "field briefing" held in Masur Auditorium on the afternoon of July 10. The briefing involved discussion of the June 26 announcement of the completion of a working draft of the human genome by NIH and Department of Energy international Human Genome Project partners and by Celera Genomics, and the implications of genomic research for understanding and treating human diseases.

The meeting was convened by Rep. Connie Morella (R-MD), chair of the technology subcommittee of the committee on science in the U.S. House of Representatives. She was joined by five of her subcommittee members: Rep. Gil Gutknecht (R-MN), Rep. Roscoe Bartlett (R-MD), Rep. Lynn Rivers (D-MI), Rep. Brian Baird (D-WA), and Rep. Michael Capuano (D-MA). They heard from NHGRI director Dr. Francis Collins; Celera Genomics, Inc., president Dr. J. Craig Venter; Human Genome Sciences, Inc., president Dr. William Haseltine; and the president of the Maryland High Technology Council, Dyan Brasington. Dr. Ari Patrinos, associate director of science for biological and environmental research at DOE, joined the group during questioning.

Rep. Connie Morella

The joint announcement of completion of the working draft of the human genome by the international HGP partners and Celera Genomics sparked discussion of cooperation between the public and private sectors. Participants discussed the crucial balance between the public sector's need for free and unfettered access to genomic data and the private sector's need for protection of its commercial interests. "This is clearly private/public coordination on a grand scale," said Venter.

The completed sequence of the human genome will have a profound impact on advances in pharmaceutical technologies. "Is genetics over now that we have the sequence?" asked Collins. "No more (than chemistry was) over than in 1800, when we got the periodic table of elements." The sequence will enable researchers to develop new drug therapies at an accelerated rate. "The future is new drugs to treat untreatable diseases," added Haseltine. He foresees genetics playing a critical role in future drug development, and predicted that within 10 years at least 20 percent of drugs would be genetically based. In 20 years, he predicts this proportion of genetically based drug therapies will increase to between 80 and 90 percent of all available drug treatments. Venter stressed the importance of NIH research in the development of effective sequencing strategies and for development of drug therapies. "Most therapeutics will come from a fuller understanding of the genetic code," he added.

Dyan Brasington, president of the Maryland High Technology Council

Accompanying this optimism concerning advances in drug treatments, members of the subcommittee expressed concerns about the ethical, legal and social implications of the genetic discoveries. Participants discussed issues of public concern such as genetic privacy and gene patenting.

Collins informed the members of ongoing efforts to study the policy implications of genetics research. He mentioned NHGRI's creation of the ELSI program in 1990 to address the ethical, legal and social implications of the Human Genome Project. For the past 10 years, the ELSI program has examined issues such as the privacy and fair use of genetic information, the impact of genetic testing on society, and informed consent in genetics research. Because of the work of ELSI programs, many of the pressing ethical issues involving genetic technologies have been extensively studied. Public policy must be updated to reflect the results of these studies.

Dr. William Haseltine

Collins urgently expressed the need to take action to safeguard the fair use of genetic information by health insurers and employers. "We don't need more study — we need to fix it," he said.

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