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Biomedical Politics (1991)
Institute of Medicine (IOM)

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. "The Human Genome Project: The Formation of Federal Policies in the United States, 1986-1990." Biomedical Politics. Washington, DC: The National Academies Press, 1991.

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BIOMEDICAL POLITICS

the numerous individuals who originated different conceptions of systematic genome-scale research. It also tracks how the technical ideas were translated into science programs at DOE, NIH, and the Howard Hughes Medical Institute (HHMI). This history is mingled with the concomitant process by which these science programs were funded by Congress. Securing a budget for a new program is the first step that requires justification to a community beyond the science agencies, because the budget processes within the executive branch and the justification of budgets to the appropriations committees in Congress both entail considerable effort. Securing a budget requires convincing those with broad-ranging responsibilities well beyond a particular scientific community not only that something new is needed but that it is needed more than other items competing for funds in the federal budget. Programs must contend not only with other life science programs but also with broader national priorities within science and with any federal programs that entail annual appropriations.

In the case of the genome project, the legislative and bureaucratic developments hinged on arguments, made principally by scientists themselves, about the merits of the enterprise. Some of the principal arguments and issues raised in the process of persuasion are teased apart in the final section of this paper. The justifications proffered for public funding of the genome project generated a set of obligations that the project will have to meet, and I briefly note these and discuss whether keeping such promises matters. Four brief appendices elaborate on certain specific issues mentioned only briefly in the text.

The future of the genome project remains in doubt. Public fears of how genetic information might be handled, discomfiture with the power of such intimate knowledge, and democratic distrust of powerful elites are all elements that could disrupt the working consensus that currently favors public support. Opposition to a new style of biology and research management has been intense since the beginning and shows little sign of abating. There is no disease-oriented constituency supporting the program, and so the genome program is largely a creature of the molecular biologists and human geneticists who conceived it and supported it in its early stages. The human genome project is thus, more than many other areas of biomedical research, under pressure to produce results, and it is likely to be held to greater standards of accountability than other projects for the initial promises made on its behalf. Whether the genome project is judged a social benefit is contingent on how its results are used, and there will be considerable uncertainty about this for several years at least.

The genesis of the human genome project highlights the complex interplay between people and the institutions in which they work, illumi-

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