The Human Genome Project was a 13-year research effort coordinated by the U. S. Department of Energy (DOE) Human Genome Project and the National Institutes of Health (NIH) National Human Genome Research Institute (NHGRI). Its goals included: identifying every gene in the human DNA (ca. 30,000); determining the sequence of each chemical base pair (ca. 3 billion); storing the information on publicly accessible electronic databases; developing tools for analyzing the information; transferring related technologies to the private sector; and providing specific policy recommendations regarding the ethical, legal, and social issues that might arise with respect to human genome research. Charles DeLisi of the Office of Health and Environmental Research is credited as the first government scientist to conceive and outline the feasibility, goals, and parameters of the Human Genome Project.
The DOE became interested in the project as a valuable resource for better studying the effects of radiation and certain energy-related chemicals on human health. They established the Human Genome Initiative with $5.3 million for initial research in 1986. The NIH became equally interested for the inevitable innovations that a human genome map would provide for health care in America. The two agencies formalized a long-term partnership in a 1988 agreement. After two years of development, they presented a five-year research plan to Congress. They received a congressional commitment of $200 million a year, for a projected 15-year project. Scientists argued that a complete, detailed map of the human genome would be “the source book for biomedical science in the 21st century” and would significantly advance scientific understanding of molecular medicine, waste control and environmental cleanup, biotechnology, energy sources, and risk assessment. Specific theoretical benefits might include improved diagnosis and early detection of diseases; more rational drug designs, leading to individually customized drugs, and effective gene therapy; better understanding of the vulnerabilities of specific genetic diseases; enhanced protection from biological warfare; more efficient biofuels; and significantly improved forensics capabilities. Scientists even argued that a mature understanding of the human genome might provide historians and anthropologists with hard evidence for human migratory patterns, patterns of human mutation that may have had an impact on historical events, and an outline of genetic evolution.
Working in cooperation with 18 countries worldwide, the Human Genome Project surpassed its initial expectations early on and revised its initial five-year plan in 1993, bringing the project two years ahead of schedule. After announcing its third and final five-year plan in 1998, projecting a completion of a detailed map of the DNA sequence by 2003, the Human Genome Group faced its first competition from the private sector.
A private company, Celera Genomics, announced that it would complete its own sequencing in just three years—two years ahead of the publicly funded Human Genome Project. Politicians and the national news media voiced concerns that the private corporation might patent its findings before the Human Genome Project could make their research public. The risk of such a move was low, but the prospect was sufficiently shocking to force the project to the attention of the American public. Public sentiment strongly favored legislation forbidding private patents of human genetic information, and Celera finally announced that it would cooperate with the goals of the original public project. In May 2000 the International Human Genome Sequencing Consortium allayed fears by specifically reaffirming their opposition to patents, licenses, subscriptions fees, or other limitations on using information from the human genome database. The following month, on June 26, Celera and the Human Genome Project jointly announced that after mapping 90 percent of the DNA sequencing, they had both arrived at working rough drafts of the complete human genome, and a detailed map was produced in 2003.
The race between the Human Genome Project and Celera Genomics inspired public debate on the ethical implications of such easily accessible information. Scientists and other academics had long struggled with questions of privacy, fairness and discrimination, property rights, and informed consent, as well as more mundane issues of how to incorporate the new information into mainstream clinical practice, and how to educate future generations in the field of genetic research. Other observers, however, noted that little or no attention was paid to governing how the human genetic information might be used in other research areas, including human cloning, stem cell research from human embryos, and custom cloning for organ harvesting. In 1998 the NHGRI issued an updated list of ethical questions to consider, including those dealing with the project’s impact from philosophical, theological, and ethical perspectives. Religious leaders, including many within the Roman Catholic Church, continued to voice concerns that no effort was made to ensure that scientists were grounded by a reliable standard with which to judge their bioethical considerations. The project recommended that future students of genetics receive multidisciplinary training in biology, computer science, engineering, mathematics, physics, and chemistry, but no mention was made of the need for study in philosophy or theology. The full impact and consequences that the Human Genome Project will have on the direction of humanity, for good or ill, may not be understood by historians for another century or more; current predictions will most likely underestimate its future effects.
See also COMPUTERS; morality; religion; science
AND technology.
Further reading: Human Genome Project Information. Available online. URL: Http://www. ornl. gov. Accessed January 5, 2009.
—Aharon W. Zorea
World History
