In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 14.1 (2004) 47-54 [Access article in PDF] Ethical Guidelines for Human Embryonic Stem Cell Research*(A Recommended Manuscript) Adopted on 16 October 2001Revised on 20 August 2002 Ethics Committee of the Chinese National Human Genome Center at Shanghai, Shanghai 201203 Human embryonic stem cell (ES) research is a great project in the frontier of biomedical science for the twenty-first century. (...) Be- cause the research involves the use of human embryos, it triggers serious debate on ethical issues. Opponents consider the embryo to be an early form of human life that should be respected and not destroyed. However, the majority of scientists support embryonic stem cell research, believing that it offers good prospects for the treatment of diseases that have remained incurable until now and so will benefit humankind. The Ethics Committee of the Department of Ethical, Legal, and Social Implications of the Chinese National Human Genome Center at Shanghai seriously discussed the ethical debate initiated by embryonic stem cell research. We concluded that we should support the scientists of our country in actively carrying out human embryonic stem cell research for the noble cause of "medicine being a beneficent art." For the healthy and orderly development of human embryonic stem cell research in our country, we put forward the following recommended Ethical Guidelines for Human Embryonic Stem Cell Research as a reference for leaders, administrative departments, and related scientists. Preface Article 1. Human embryonic stem cells are the primitive cells that play the main role in the growth and development of a human body. These [End Page 47] primitive cells have the potential for infinite proliferation, self-renewal, and multi-directional differentiation. If scientists can discover the mechanism of differentiation of human embryonic stem cells, it will be possible to induce differentiation of human embryonic stem cells to form various types of human cells for clinical cell therapy. If human embryonic stem cell research can be integrated with modern biomedical engineering techniques, it also will be possible to make repair and replacement of human tissues and organs a reality. Article 2. There are two ways to classify human embryonic stem cells. One way is to classify them according to their potential for differentiation. There could be three kinds of stem cells: totipotent stem cells, pluripotent stem cells, and unipotent stem cells.A totipotent stem cell has the potential to develop into a whole individual. It can differentiate into the more than 200 cell types in the whole body, construct any tissue or organ of the body, and finally develop into a whole individual. The fertilized egg and the cleavage cells at the very early stage of embryonic development are totipotent stem cells.A pluripotent stem cell has the potential to differentiate into many cell types derived from the three embryonic layers. However, it has lost the capacity to develop into a complete organism.A unipotent stem cell is derived from the further differentiation of the pluripotent stem cell. It can differentiate only into one cell type such as a hematopoietic stem cell, neural stem cell, and others.The other way is to classify human stem cells according to their source. There could be two kinds of human stem cells: embryonic stem cells and tissue stem cells (also called adult stem cells). The former involves experimentation with embryos, which has serious ethical implications. Ethical issues associated with the latter are mainly expressed in the various opinions regarding the allocation of health resources. Article 3. Human embryonic stem cells are the group of cells called the blastocyst inner cell mass during the early stage of embryonic development. They are the main source of totipotent stem cells, and hence the focal and hot point in stem cell research. Studies on the clinical application of embryonic stem cells probably will involve use of the somatic cell nucleus transfer (SCNT) technique, which destroys the early human embryo. At present, the ethical and moral debate is very serious in human embryonic stem cell research regarding whether the research will develop... (shrink)

Galton defined eugenics as the science of improvement of the human race germ plasm through better breeding and claimed that the study of agencies under social control which may improve or impair the racial qualities of future generations should be pursued. Eugenic theoretical approaches and eugenic state political policies are deliberate intentions of adopting eugenic measures, whether or not they have been actually implemented and no matter how successful the results of those practices might have been. They involve agents (...) and goals to be achieved. Some eugenists intended that eugenic programmes should be enforced by state agencies; others defended that those programmes might be implemented on a voluntary choice. The eugenic consequences of practices that were not deliberately designed to have eugenic goals are also considered. This latter category is very often relevant while discussing eugenics as related to a number of new biotechnologies. The concern with eugenics today does not focus so much on the risks of population improvement programmes to be implemented by central powers; nevertheless, practices adopted by health institutions, insurance and legal agencies may lead to eugenic consequences. The social and eugenic implications of the Human Genome Project are discussed. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Human Genome Project and BioethicsEric T. Juengst, Ph.D. (bio)The fifteen-year "human genome project" at the National Institutes of Health and the Department of Energy officially began on October 1, 1990. With it began a new dimension in federally supported scientific research: concurrent funding for work to anticipate the social consequences of the project's research and to develop policies to guide the (...) use of the knowledge it produces. As a result, the National Center for Human Genome Research (NCHGR) at NIH will support the largest public investment in bioethical analysis to date.NCHGR was established to work with other federal, private, and international organizations on the scientific effort to characterize the form and content of the human genome. The research will yield information—high-resolution genetic linkage and physical maps of all the human chromosomes as well as human DNA sequence data—that will be a resource for studies of gene structure and function. It will greatly increase our understanding of the genetic aspects of human health and disease. That increased understanding will eventually provide insights into the prevention and treatment of the 3,000 known inherited disorders, and of conditions caused by our (gene-governed) physiological reactions to pathogens, toxins, and mutagens of external origin.It has been clear since the conception of the human genome project, however, that professional and public deliberations concerning the responsible use of genetic information must be a part of the process. The most immediate consequence of genome research will be the development of new diagnostic and predictive tests, well in advance of corresponding therapeutic or curative advances. The implications of acquiring and using that knowledge about individuals raise policy questions at many levels within society. The primary purpose of the Ethical, Legal and Social Implications Program at the NCHGR is to anticipate and address these questions early in the life of the scientific project, to help optimize the [End Page 71] benefits to human welfare and opportunity from the new knowledge, and to guard against its misuses.The program has identified three sets of questions as particularly important to pursue as the genome initiative proceeds:1.Issues involved in the integration of new genetic tests into medical practice. Human genome research is expected to increase greatly the number of gene-based diagnostic and prognostic tests available to health professionals. The bioethical policy problems involved in integrating those tests effectively into medical practice include developing standards for:— accuracy and quality control of genetic tests;— medical indications for testing and design of testing protocols;— professional responsibilities of clinicians who perform tests;— confidentiality of information obtained from testing;— access to and use of test results by third parties, such as health insurers; and— reimbursement for testing and test-related counseling.These are problems for both those charged with regulating the use of new genetic tests and for those establishing the standards of practice within the health professions. Thus, in addition to soliciting and funding scholarly research proposals on both the factual and normative questions raised by these problems, the program is commissioning a major new study by the National Academy of Sciences/Institute of Medicine aimed at providing professional guidelines for the integration of genetic services into mainstream medical practice.2. Issues involved in educating and counseling individuals about genetic test results. The primary risk that health professionals will face in using genetic tests is the misinterpretation of their findings and the resulting potential for psychological trauma, stigmatization, and discrimination. Sometimes, out of ignorance, patients, families, and social institutions already stigmatize genetic disorders and treat those with them unfairly. This risk broadens as the genetic elements of more health problems are uncovered and gene-based tests for susceptibilities and carrier states are developed.To protect against these risks, NCHGR is soliciting and supporting projects aimed at improving professional and public understanding of these tests and their implications. For example, a philosopher is leading a team of geneticists and physicians in a scholarly effort to clarify [End Page 72] concepts of genetic susceptibility and draw out the social meaning of their different interpretations. Other projects involve social scientific studies of genetic risk perceptions, stigmatization, and discrimination. The conclusions of these studies, and... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Human Genome ProjectSharon J. Durfy (bio) and Amy E. Grotevant (bio)In recent years, scientists throughout the world have embarked upon a long-term biological investigation that promises to revolutionize the decisions people make about their lives and lifestyles, the way doctors practice medicine, how scientists study biology, and the way we think of ourselves as individuals and as a species. It is called the Human (...) class='Hi'>Genome Project, and its ultimate goal is to map and determine the chemical sequence of the three billion nucleotide base pairs that comprise the human genome. The feat is expected to take about fifteen years (see General Surveys).These three billion base pairs include an estimated 50,000 to 100,000 genes. The rest of the genome—perhaps 95 percent of it—is nongenic sequences with unknown function, sometimes called "junk." Determining the order and organization of all this material has been likened to tearing six volumes of the Encyclopaedia Brittanica into pieces, then trying to put it all back together to read the information (Surveys: Hall 1990). The effort could be well worth it, many scientists say, because it is expected to yield major insights into many common and complex diseases, including cancer, cardiovascular disease, and Alzheimer's disease (Debate: Dulbecco 1986; Koshland 1989).The Human Genome Project is not without controversy, however (Debate: Davis 1990; Leder 1990; Rechsteiner 1990). Many scientists fear that funding for it will be diverted from other areas of research, rather than obtained from new funding sources. This has enlivened the debate about the relative value of "big" versus "small" science. Also, the value of undertaking a complete sequencing of the genome has been questioned, especially given the high proportion of non-genic sequences.Advocates of the effort converted many critics by making two alterations in the original plan. Plans were included to simultaneously determine the nucleotide sequence of the genomes of other organisms; this provides comparisons and points of reference for the human sequence (U.S.: NIH/DOE 1990). Second, in response to concerns about the high cost of developing technology to sequence the whole [End Page 347] genome, the focus moved from large-scale sequencing to mapping the genome, which would hasten the search for disease genes (U.S.: NIH/DOE 1990).The ideal map would be both genetic, locating DNA markers, or signposts, at closely spaced intervals along the chromosomes, and physical, indicating the exact distance between these markers (Map: McKusick 1991). Since 1973, Human Gene Mapping workshops (HGM) have been held at least every two years to locate, compare, and compile genetic markers. This information is published and is accessible through Genome Database at Johns Hopkins University (McKusick 1991). The most recent Human Genome Mapping workshop was held in August 1991, at which the Human Genome Organization (HUGO) began to assume increased responsibility for coordination of the international mapping effort (Surveys: Maddox 1991).Historical Background of the United States EffortThe first serious discussions about sequencing the entire human genome occurred at a workshop at the University of California at Santa Cruz in 1985 (U.S.: Sinsheimer 1989). A second workshop, organized by the U.S. Department of Energy (DOE) and held in March 1986, addressed the feasibility of an organized program (U.S.: DOE 1986). Shortly thereafter, DOE instituted its own genome project (U.S.: DOE 1987). Reports in early 1988 from both the National Research Council (NRC) of the National Academy of Sciences (NAS) and Congress' Office of Technology Assessment (OTA) (U.S.: NRC 1988; OTA 1988) served as catalysts, and in fiscal year 1988, the U.S. Congress officially launched the Human Genome Project by appropriating funds to both the Department of Energy and the National Institutes of Health (NIH).To avoid potential congressional "meddling" (U.S.: Roberts 1988), NIH and DOE drafted a memorandum of understanding for interagency coordination in October 1988 (U.S.: NIH/DOE 1990). The agencies then created both separate and joint committees, and working groups to administer the project. NIH established the Office of Human Genome Research in 1988 (directed by James D. Watson) to plan and coordinate NIH genome activities. That office has evolved into the National Center for Human Genome Research (NCHGR... (shrink)

In the future, the Human Genome Project could eventually open the way to perhaps the determination of the complete wiling diagram of the human brain. This kind of progress may move neuroscience forward into the next level of understanding of human neurophysiology, development and behavior. The next crucial step would be to know, exactly what are the function of this genes, and why its lack or alteration causes a certain disease. Although, genomic has in some (...) way contributed to almost every aspects of neurobiology, the results are both significant and troubling.One of the areas, where HGP will contribute to neuroscience is the mapping of qualitative or complex traits. Complex traits like appearence, intelligence and personality are likely to be affected by hundreds or thousands of different genes, rather than one or a few. On the other hand, the complex organisms are not just the simple result of the sum of their genes, nor do genes alone build the different part of organism or influence behaviour by themselves. In spite of the wide variety of misunderstanding, misinterpretation or possible misusing of these new genetic information, this sort of research may eventually lead to useful practical medical results for humans. This information can contribute to work out therapies to treat learning and memory disorders, neurological disorders like Alzheimer's disease, afflicting more and more people in an increasingly ageing population. Genetics believe, there are 3000 to 4000 hereditary diseases. Gene therapy could one day cure some of them, but only when all the details of their genetic basis are known. Biomedicine in the next century will probably have a completely new role in society based on the beginnings inherent in the HGP.There is a general agreement, that modern neuroscience raises important ethical concerns that not have been adequately addressed either by scientists themselves or by the bioethics community. Some scientists interpreted the rapid progress in neuroscience as additional conformation for a materialist account of human nature, resulting in an attack on traditional belief systems. There is a clear tension between the widely held believes and the intellectual views of many scientists. (shrink)

This work examines the scientific and social objectives of the Human Genome Project. Scientific ones are “to map the human genome” while social ones are “to improve the human health and welfare”. Ten years after this project has begun, their scientific aims are fullfilled, but their social ones are still pending. The reason for that is that both scientists and policy makers have forgotten something: the current configuration for the right to intellectual property—patents (...) —grants to the discoverers of the human genetic map the possibility of using their new knowledge to obtain private profit. There is a scientific-business dynamic in this area that make difficult to reach the proclaimed social aims of the human genome project. “Human dignity” —a common topic in international and European Declarations—is also afected. (shrink)

For the first time in history, genetics will enable science to completely identify each human as genetically unique. Will this knowledge reinforce the trend for more individual liberties or will it create a ‘brave new world’? A law policy approach to the problems raised by the human genome project shows how far our democratic institutions are from being the proper forum to discuss such issues. Because of the fears and anxiety raised in the population, and also (...) because of its wide implications on the everyday life, the human genome analysis more than any other project needs to succeed in setting up such a social assessment. Keywords: human genome project, judiciary law policy, legislative activity, new ethics institutions, methodology in law reform, public debate, social consensus CiteULike Connotea Del.icio.us What's this? (shrink)

In the Museum of Science and Technology in San Jose, California, there is a display dedicated to advances in biotechnology. Most prominent in the display is a double helix of telephone books stacked in two staggered spirals from the floor to the ceiling twenty-five feet above. The books are said to represent the current state of our knowledge of the eukaryotic genome: the primary sequences of DNA polynucleotides for the gene products which have been discovered so far in the (...) twenty years since cloning and sequencing the genome became possible. (shrink)

In the Museum of Science and Technology in San Jose, California, there is a display dedicated to advances in biotechnology. Most prominent in the display is a double helix of telephone books stacked in two staggered spirals from the floor to the ceiling twenty-five feet above. The books are said to represent the current state of our knowledge of the eukaryotic genome: the primary sequences of DNA polynucleotides for the gene products which have been discovered so far in the (...) twenty years since cloning and sequencing the genome became possible. (shrink)

The Ethical, Legal, and Social Implications (ELSI) program of the Human Genome Project stands as a model for how to organize bioethical inquiry for a rapidly changing field. Neuroscience has experienced significant growth in recent years and there is increasing interest in organizing critical reflection on this field, as evidenced by the creation of “neuroethics.” A nascent framework for reflection on the implications of neuroscience is emerging but significant work remains, given the pace and scope of neuroscientific (...) developments. The adoption of an ELSI program, modeled on that of the ELSI program of the Human Genome Project, promises a way for neuroscience to meet important organizational, educational, and policy objectives. Review of recent criticisms of the HGP ELSI program suggests that an ELSI program for neuroscience would face certain obstacles. Those interested in a neuroscience ELSI program will need to develop appropriate resources to overcome these obstacles. (shrink)

Biologists are faced two questions which are new in their fields. How far to go in genetical research? How should new findings be applied?Theoretically, the answers are not so difficult to find. Research should not be halted or even slowed down. On which basis should we limit knowledge, it would even be on topics such as cancer, AIDS, ageing,…, a crime against humanity not to develop research. Also theoretically, findings would be applied for the good of humanity and for a (...) better health. But, negative consequences can, however, be expected if applications of research, and research itself, serves interests of private companies or of individuals. We cannot deny the advantages of the HGP which are considerable indeed in discovering, isolating, describing, sequencing genes, using in genie therapy,…, developing a better predictive medicine.But rules, and probably laws, will have to be developed to protect the confidentiality of genetical information, the risk being present that insurance companies or employers would use it to discriminate the individuals. People can not be defined only by their genomes. Individuals or populations cannot be stigmatised or ostracised by their genes. (shrink)

In this paper I claim that the goal of mapping and sequencing the human genome is not wholly new, but rather is an extension of an older project to map genes, a central aim of genetics since its birth. Thus, the discussion about the value of the HGP should not be posed in global terms of acceptance or rejection, but in terms of how it should be developed. The first section of this paper presents a brief history (...) of the project. The second section distinguishes among four kinds of issues relevant to an evaluation of the HGP: those economic and organizational issues related to the feasibility of the project; the ethical questions arising in the development of the project and the application of the data gathered; the empirical issues relevant to the scientific value of the project; and conceptual issues like reductionism and determinism relevant to understand the nature and scope of the project. In a third section, I analyze in detail whether the HGP and, more generally, molecular biology is reductionistic. (shrink)

Genetics today have occupied among sciences the privileged role of physics and chemistry of the beginning of this century. This explosive scientific field influences crucially various disciplines, among them life sciences and informatics. Moreover, it imposes “de facto” dramatic changes to our individual and collective life style, thus influencing the whole framework of our civilisation. The intensive involvement of the global economy in the progress of the research and the dissemination of its applications, arises ethical issues to be arranged.The danger (...) of reappearance of Eugenic ideologies and practices does threaten the contemporary society. Anthropology has to contribute more intensively in the cultivation of a humanistic and moral nurture, necessary for the new framework of principles, efficient for the technological society of the 21st century. (shrink)

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 interest bioethicists, legal scholars, and policy makers. Essays: “The Genome Project and the Meaning of Difference,” Timothy F. Murphy “Eugenics and the Human Genome Project: Is the Past Prologue?,” Daniel J. Kevles “Handle with Care: Race, Class, and Genetics,” Arthur L. Caplan “Public Choices and Private Choices: Legal Regulation of Genetic Testing,” Lori B. Andrews “Rules for Gene Banks: Protecting Privacy in the Genetics Age,” George J. Annas “Use of Genetic Information by Private Insurers,” Robert J. Pokorski “The Genome Project, Individual Differences, and Just Health Care,” Norman Daniels “Just Genetics: A Problem Agenda,” Leonard M. Fleck “Justice and the Limitations of Genetic Knowledge,” Marc A. Lappé. (shrink)

In this paper we discuss the scientific value of the human genome project. To what extent is the data obtained by sequencing the entire human genome useful in the gene dicovery process? Responding to Alex Rosenberg' skepticism about the value of such data, we maintain that brute sequence data is much more useful than he suggests.

The Human Genome Project has raised many issues regarding the contributions of genetics to a variety of diseases and societal conditions. With genetic testing now easily conducted with lowered costs in nonmedical domains, a variety of privacy issues must be considered. Such testing will result in the loss of significant privacy rights for the individual. Society must now consider such issues as the ownership of genetic data, confidentiality rights to such information, limits placed on genetic screening, and (...) legislation to control genetic testing and its applications. There is often a conflict between individual rights to privacy and the need for societal protection. (shrink)

The Human Genome Project (HGP) brings genetics and genetic knowledge to the point of paradoxical counterproductivity. Population-wide genetic screens, replacing specific tests intended for and useful to those at risk, become counterproductive when the HGP's "normal human " defines everybody as at risk. More over, the knowledge generated by the HGP disables those whom it is meant to serve: We are rendered impotent as a laity, subject to expertise regarding the truth of our being. The standard (...) response here is that we need more science education and easier access to scientific knowledge. But that is simply to beg the question. The question to ask about knowledge is not whether it is true or properly scientific (which it may very well be) but rather whether it is good. The good of knowledge must be demonstrated and not uncritically assumed. Thus, more education can, too, be paradoxically counterproductive. What, then, are our prospects? (shrink)

The economic costs to the insurers of complementary routine genetic testing would outweigh the benefits. However, should testing technology in future be refined so as to produce a cheap and reliable test, there is no reason why insurers might not take up predictive testing as part of the normal underwriting process. It is this possibility which justifies formulating a pre-emptive policy. At the very least, there are reasons for promoting and protecting the welfare of the proposer so as to redress (...) the bargaining positions between him or her as a consumer of a service and the insurer as a commercial concern. Further considerations relate to the social purpose of insurance as a social mechanism, and the need to find ways of avoiding undermining this in light of Human Genome Project. (shrink)

By developing an elaborate allegory, this paper attempts to show that the advertised aim of the Human Genome project, to sequence the entire 3 billion base pair primary sequence of the nucleic acid molecules that constitute the human genome, does not make scientific sense. This raises the questions of what the real aim of the project could be, and why the molecular biological community has chosen to offer the primary sequence as the objective to (...) be funded, when identifying functionally important sub-regions of the genetic material is both far more useful and independently attainable an aim. (shrink)

Through an examination of the actual research strategies and assumptions underlying the Human Genome Project (HGP), it is argued that the epistemic basis of the initial model organism programs is not best understood as reasoning via causal analog models (CAMs). In order to answer a series of questions about what is being modeled and what claims about the models are warranted, a descriptive epistemological method is employed that uses historical techniques to develop detailed accounts which, in turn, (...) help to reveal forms of reasoning that are explicit, or more often implicit, in the practice of a particular field of scientific study. It is suggested that a more valid characterization of the reasoning structure at work here is a form of case-based reasoning. This conceptualization of the role of model organisms can guide our understanding and assessment of these research programs, their knowledge claims and progress, and their limitations, as well as how we educate the public about this type of biomedical research. (shrink)

Through an examination of the actual research strategies and assumptions underlying the Human Genome Project, it is argued that the epistemic basis of the initial model organism programs is not best understood as reasoning via causal analog models. In order to answer a series of questions about what is being modeled and what claims about the models are warranted, a descriptive epistemological method is employed that uses historical techniques to develop detailed accounts which, in turn, help to (...) reveal forms of reasoning that are explicit, or more often implicit, in the practice of a particular field of scientific study. It is suggested that a more valid characterization of the reasoning structure at work here is a form of case-based reasoning. This conceptualization of the role of model organisms can guide our understanding and assessment of these research programs, their knowledge claims and progress, and their limitations, as well as how we educate the public about this type of biomedical research. (shrink)

Definition of the problem: The ELSI (Ethical, Legal, and Social Issues) program of the Human Genome Project is the biggest bioethical research project to date. However, it has met with fairly critical reception. Arguments: ELSI is nevertheless an important element in current bioethics. We can learn not just from the results and methodology of the numerous studies that received ELSI funding, but also by looking at the pros and cons of its close institutional integration into the (...) Human Genome Project. Finally, excellent didactic resources have been developed, providing helpful tools for the improvement of medical ethics teaching. Conclusion: A critical analysis of the ELSI program can be instrumental in developing new perspectives in medical ethics. (shrink)

While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis (...) of a sample of ELSI publications appearing between 2003 and 2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries. (shrink)

The Bermuda Principles for DNA sequence data sharing are an enduring legacy of the Human Genome Project. They were adopted by the HGP at a strategy meeting in Bermuda in February of 1996 and implemented in formal policies by early 1998, mandating daily release of HGP-funded DNA sequences into the public domain. The idea of daily sharing, we argue, emanated directly from strategies for large, goal-directed molecular biology projects first tested within the “community” of C. elegans researchers, (...) and were introduced and defended for the HGP by the nematode biologists John Sulston and Robert Waterston. In the C. elegans community, and subsequently in the HGP, daily sharing served the pragmatic goals of quality control and project coordination. Yet in the HGP human genome, we also argue, the Bermuda Principles addressed concerns about gene patents impeding scientific advancement, and were aspirational and flexible in implementation and justification. They endured as an archetype for how rapid data sharing could be realized and rationalized, and permitted adaptation to the needs of various scientific communities. Yet in addition to the support of Sulston and Waterston, their adoption also depended on the clout of administrators at the US National Institutes of Health and the UK nonprofit charity the Wellcome Trust, which together funded 90% of the HGP human sequencing effort. The other nations wishing to remain in the HGP consortium had to accommodate to the Bermuda Principles, requiring exceptions from incompatible existing or pending data access policies for publicly funded research in Germany, Japan, and France. We begin this story in 1963, with the biologist Sydney Brenner’s proposal for a nematode research program at the Laboratory of Molecular Biology at the University of Cambridge. We continue through 2003, with the completion of the HGP human reference genome, and conclude with observations about policy and the historiography of molecular biology. (shrink)

The Human Genome Project is the attempt to sequence the complement of human DNA. Its ultimate purpose is to understand and control human genetics. The social and ethical concerns raised by this attempt have been much debated, especially fears concerning human genetic engineering and eugenics. An almost completely neglected aspect of the genome project's potential effects is its impact on world agriculture. The Human Genome Project will provide source information (...) to transform commercially and therapeutically valuable segments of the human genetic code into agricultural products using the newly extant technologies of gene farming. This application of developing genomic technologies has at least two foreseeable effects: 1) Transforming global agricultural markets and ecologies, raising possibilities of novel forms of neocolonialism and the further destruction of genetic diversity; and 2) transforming world health and society through new modes of pharmaceutical production and the unregulated expansion of medical access to novel and traditional therapeutics. (shrink)

On October 1, 1988, thirty-five years after co-discovering the structure of the DNA molecule, Dr. James Watson launched an unprecedented experiment in American science policy. In response to a reporter's question at a press conference, he unilaterally set aside 3 to 5 percent of the budget of the newly launched Human Genome Project to support studies of the ethical, legal, and social implications of new advances in human genetics. The Human Genome Project (HGP), (...) by providing geneticists with the molecular maps of the human chromosomes that they use to identify specific human genes, will speed the proliferation of a class of DNA-based diagnostic and risk-assessment tests that already create professional ethical and health-policy challenges for clinicians. “The problems are with us now, independent of the genome program, but they will be associated with it,” Watson said. “We should devote real money to discussing these issues.” By 1994, the “ELSI program” (short for “Ethical, Legal, and Social Implications”) had spent almost $20 million in pursuit of its mission, and gained both praise and criticism for its accomplishments. (shrink)

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.

There are a number of controversies surrounding the Human Genome Project. Some criticisms are based on the contention that the full human sequence will be scientifically worthless; others stem from short-term worries about the social impact of genetic testing and the release of genetic information about individuals. I argue that, properly understood, the HGP is a valuable scientific project with a misleading name, that the moral issues surrounding the short-term difficulties are relatively straightforward but that (...) there are problems of practical politics in implementing the obvious solutions. Finally, I suggest that the HGP serves as the occasion for raising deeper philosophical questions about our commitment to improve the quality of human lives. (shrink)

This article examines the mobilization of resources for the Human Genome Mapping Project in the United Kingdom. The Project was established through an award of additional funds to the Medical Research Council at a time of financial stringency within publicly funded science, accompanied by relatively little of the debate that had surrounded the U.S. initiative. It is argued, following Fujimura and Star’s terminology, that the project was “packaged” and repackaged by its proponents so that it (...) aligned the, otherwise disparate, agendas of several “social worlds.” Furthermore, by bringing together certain social worlds and not others, some issues were also excluded from discussion. In this instance, the social and ethical issues surrounding genetic mapping were accorded a much lower profile than in other national programs. (shrink)