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The Human Genome Project is an expensive, ambitious, and controversial attempt to locate and map every one of the approximately 100,000 genes in the human body. If it works, and we are able, for instance, to identify markers for genetic diseases long before they develop, who will have the right to obtain such information? What will be the consequences for health care, health insurance, employability, and research priorities? And, more broadly, how will attitudes toward human differences be affected, morally and socially, by the setting of a genetic "standard"?The compatibility of individual rights and genetic fairness is challenged by the technological possibilities of the future, making it difficult to create an agenda for a "just genetics." Beginning with an account of the utopian dreams and authoritarian tendencies of historical eugenics movements, this book's nine essays probe the potential social uses and abuses of detailed genetic information. Lucid and wide-ranging, these contributions will provoke discussion among bioethicists, legal scholars, and policy makers

It is usual in science studies to focus attention on either science policy or laboratory practices. This paper examines the mutual shaping of science and policy through the case of the Human Genome Mapping Project in the UK. It is argued that the evolution of policy was not merely a series of administrative choices. The strategies, boundaries and accounting methods of the programme, together with the organization and conception of research among grant-holders, can be shown to reflect the, often competing, demands from the worlds of science and administration. As policy evolved, the question of what science to support was translated into debates over the best way to do science, what scientific knowledge was for and what was to count as worthwhile knowledge.

The U.S. Human Genome project is the largest scientific project funded by the federal government since the Apollo Moon Project. The overall effect from this project should be of great benefit to humankind because it will provide a better understanding both of single gene defects and multifactorial or familial diseases such as diabetes, arteriosclerosis, and cancer. At first this will lead to more exact ways of screening and diagnosing genetic disease, and later it will lead, in many if not most instances, to specific genetic cures. However, in the past, in both the U.S. and German eugenic movements genetic information has been misused. Hopefully, by remembering and understanding the past injustices and inhumanity of negative eugenics, further misuse of scientific information can be avoided.

Three main reasons why a genetic approach is unlikely to be a solution to common diseases in the foreseeable future are discussed. The first is the great importance of environmental circumstances in determining health, the second reason is the great complexity of gene/gene, gene/environment interactions, and the third reason is human behavior with regard to compliance with medical recommendations. Since particular interests are likely to push for a genetic approach to disease, there will be a need to protect the public interest so that premature and inappropriate use of genetics is not made, and so that a balanced opportunity to better the health of all is not missed.

What options are open for people—citizens, politicians, and other nonscientists—to become actively involved in and anticipate new directions in the life sciences? In addressing this question, this article focuses on the start of the Human Genome Project (1985-1990). By contrasting various models of democracy (liberal, republican, deliberative), I examine the democratic potential the models provide for citizens' involvement in setting priorities and funding patterns related to big science projects. To enhance the democratizing of big science projects and give citizens opportunities to reflect, anticipate, and negotiate on new directions in science and technology at a global level, liberal democracy with its national scope and representative structure does not suffice. Although republican (communicative) and deliberative (associative) democracy models meet the need for greater citizen involvement, the ways to achieve the ideal at a global level still remain to be developed.

Scientists of the Human Genome Project tend to rely on three metaphors to describe their work, each of which implicitly tells much the same story. Whether they claim to interpret the ultimate "book," to fix a flawed "machine," or to map a mysterious "wilderness," they invariably cast the researcher as one who dominates and exploits the Other. This essay, which explores the ways such a story conflicts with feminist values, proposes an alternative.

This article explores some of the potential moral and social ramifications of the Human Genome Project. Research on the human genome is generating important ethical and social questions of at least three distinct kinds. First, what genetic information should be generated, and who should control its dissemination and use? Improved diagnostic techniques such as presymptomatic testing, carrier screening, and prenatal screening can provide information that poses significant ethical problems for individuals, employers and insurance companies, and the medical and counseling professions. Second, what genetic procedures should be employed? The burgeoning ability to manipulate human genotypes and phenotypes through procedures such as gene therapy and enzyme therapy are leading to difficult questions about which manipulations should be permitted and which should be prohibited. Third, how will this new information change lives? Increasing claims about the relationship of genetics to ethically and politically significant traits and behaviors are challenging human self-understanding and the capacity of social institutions to respond adequately.