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)

After acquiring knowledge of the neuroscience of learning, memory, stress and emotions, teachers incorporate more cognitive engagement and student-centered practices into their lessons. However, the role understanding neuroscience plays in teachers own affective and motivational competencies has not yet been investigated. The goal of this study was to investigate how learning neuroscience effected teachers’ self-efficacy, beliefs in their ability to teach effectively, self-responsibility and other components of teacher motivation. A pilot training-of-trainers program was designed and delivered in Liberia combining basic (...) neuroscience with information on social, emotional, behavioral and mental health issues faced by students. Tier I of the professional development was a 2 weeks workshop led by a visiting neuroscientist. A subset of the 24 Tier I secondary science teachers formed a Leadership Team who adapted the content to the Liberian context and subsequently led additional workshops and follow-up sessions for the Tier II secondary science teachers. Science teachers in both tiers completed the affective-motivational scales from the internationally vetted, multiscale Innovative Teaching for Effective Learning Teacher Knowledge Survey from the OECD. Tier II teachers completed the survey in a pre-post-delayed post design. Tier I teachers completed the survey after the workshop with their attitudes at that time and separately with retrospective projections of their pre-workshop attitudes. Ten of the 92 Tier II teachers participated in structured interviews at follow-up. Statistical analysis of survey data demonstrated improved teacher self-efficacy, self-responsibility for student outcomes, and motivation to teach. Qualitatively, teachers expressed more confidence in their ability to motivate students, engage them through active learning, and manage the class through positive rather than negative reinforcement. Teachers’ own self-regulation improved as they made efforts to build supporting relationships with students. Together, these results demonstrated that (i) teacher affective-motivational attitudes can be altered with professional development, (ii) basic neuroscience, as knowledge of how students learn, can improve teacher competency, and (iii) a training-of-trainers model can be effective in a low and middle income country for disseminating neuroscience knowledge, increasing teachers’ knowledge of students’ social and emotional needs, and promoting educational improvement. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Environmental Genome Project and BioethicsRichard R. Sharp (bio) and J. Carl Barrett (bio)Eight years ago, the Kennedy Institute of Ethics Journal published a brief selection by Eric Juengst (1991) entitled “The Human Genome Project and Bioethics.” That essay introduced and described the Ethical, Legal, and Social Implications (ELSI) Program at the National Center for Human Genome Research. 1 Since that time, (...) the ELSI program has grown to become one of the largest and most well regarded bioethics programs in the country, sponsoring the work of hundreds of researchers and coordinating bioethics activities both nationally and internationally (Marshall 1996; Meslin, Thomson, and Boyer 1997). In 1991, however, Juengst, the first director of the ELSI program, had no way of anticipating these developments. Juengst’s goal in his essay was simply to highlight some of the moral and social issues that were emerging as focal points for the ELSI program. Looking back, the issues he outlined may seem vague and overly broad. At the time, however, the essay served an important purpose, to identify areas requiring additional study and thereby to serve as a guide to others interested in joining in these discussions.In many ways, Juengst’s article serves as an inspiration to those of us working on a new bioethics project. The National Institute of Environmental Health Sciences (NIEHS) recently launched a multi-year project aimed at better understanding genetic influences on environmentally associated diseases (Albers 1997; Brown and Hartwell 1998; Cannon 1997; Kaiser 1997). This project, known as the Environmental Genome Project (EGP), plans to identify and study a number of common genetic variants that may play an important role in determining how individuals respond to environmental exposures. NIEHS hopes that the information learned through the EGP will be instrumental in developing more effective disease-prevention strategies and intervention programs. Following the precedent developed in connection with the Human Genome Project, NIEHS also plans to address the moral and social implications of the EGP. Efforts in this regard include sponsoring workshops and conferences to address such issues, as well as supporting research on the ethical, legal, and social implications of the EGP. Through this work, NIEHS hopes to anticipate potential problems before [End Page 175] they arise and to develop policies that maximize the benefits of the research while avoiding potential misuses of the information learned.In exploring the social implications of the EGP, we at NIEHS are very fortunate to be able to draw upon the work being done by the ELSI program at the National Human Genome Research Institute (NHGRI), as well as the ever-expanding bioethics literature that has been sparked by the ELSI program. Still, there is much to be done and this is an exciting time for those of us involved with the EGP. Many of the ethical, legal, and social implications of the project are only beginning to become clearer, and several of these issues appear quite different from the sorts of concerns that have previously been discussed in connection with other types of genetic research.This essay highlights some of the ethical, legal, and social implications that are emerging as important focal points for the Environmental Genome Project. Like Juengst’s 1991 paper, the goal of this article is to provide an overview of current areas of interest and to encourage others to join us in thinking about these difficult issues.The Environmental Genome ProjectIndividuals differ greatly in their responses to chemicals, drugs, radiation, smoking, alcohol, and other environmental exposures. These differential responses are the result of complex interactions between many factors, including an individual’s genetic make-up, age, sex, nutritional status, and overall health. The EGP aims to better understand the genetic basis of differential responses to environmental exposures. The vast majority of diseases, many forms of cancer, for example, are the consequence of both environmental and genetic contributions (Perera 1997). Hence, understanding the relationships between genetic variation and response to environmental exposure is important for understanding the causes of human disease and is crucial for the development of effective disease-prevention strategies.The EGP and projects like it represent a new stage of genomic research. It is expected that the Human Genome Project will complete... (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)

This article explores the challenge of developing a feminist law reform proposal to decertify sex and gender based on research conducted for the ‘Future of Legal Gender' project. Locating the proposal to decertify within a do-it-yourself, prefigurative approach to law reform, the article asks: Can a law reform proposal be both instrumental and radical? Can a proposal take shape as a viable legislative text and as a more subversive intervention to unsettle and reimagine gender’s relationship to law? This article (...) explores this at two levels. First, it considers the ontological challenges of developing a controversial law reform proposal in terms of its realness (or fictiveness), contours, and temporality, turning to ‘slow law' as a credible way of approaching radical reform. Second, it explores the design-based challenges of legal prototyping—foregrounding questions of legitimacy, participation, and purpose, which arise in designing a decertification law. At the heart of this discussion is the relationship between representation and enactment—between what a proposal presents and what its presentation does and does not accomplish. (shrink)

The Plant Ontology (PO) (http://www.plantontology.org) (Jaiswal et al., 2005; Avraham et al., 2008) was designed to facilitate cross-database querying and to foster consistent use of plant-specific terminology in annotation. As new data are generated from the ever-expanding list of plant genome projects, the need for a consistent, cross-taxon vocabulary has grown. To meet this need, the PO is being expanded to represent all plants. This is the first ontology designed to encompass anatomical structures as well as growth and developmental (...) stages across such a broad taxonomic range. While other ontologies such as the Gene Ontology (GO) (The Gene Ontology Consortium, 2010) or Cell Type Ontology (CL) (Bard et al., 2005) cover all living organisms, they are confined to structures at the cellular level and below. The diversity of growth forms and life histories within plants presents a challenge, but also provides unique opportunities to study developmental and evolutionary homology across organisms. (shrink)

Against the growing trend in philosophy toward naturalistic analysis, Kant’s Critique of the Power of Judgment has gained significant attention. Some scholars suggest that Kant’s insights bear on our aesthetic appreciation of nature, others on our account of the life sciences. In this paper I draw these lines of inquiry together to identify two overlooked dimensions of Kant’s project: the role of moral hope in problematizing the limits of natural science and the role of culture in providing a solution. (...) Kant argues that we cannot think consistently unless we are able to conceive of nature as a domain that is hospitable to human freedom. His response is to identify the productive capacity of the imagination to transform the material of nature into something more. While the prevailing conception of nature today is at best indifferent and at worst antagonistic to human habitation, this dimension of Kant’s work has much to bear on contemporary thought. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Human Genome Research in an Interdependent WorldAlexander Morgan Capron (bio)This has been the year of agenda-setting conferences for the ambitious ELSI (ethical, legal and social issues) program of the Human Genome Project (HGP). But of the dozen or more major meetings of this sort held across the country, the one held at the National Institutes of Heakh (NIH) in Bethesda, MD, June 2-4, 1991, (...) was distinctive in several respects.1As its name implies, "Human Genome Research in an Interdependent World" was a global look at the issues raised by gene mapping and sequencing. Unlike previous conferences, however, this meeting looked beyond a comparative analysis of clinical and domestic legal issues, and concentrated on topics that may require responses on a truly international level if they are to be successfully resolved.The meeting's organizers gathered an impressive group of more than seventy participants from fifteen countries, including the first significant contingent of Soviet and Japanese scientists, physicians, and philosophers at an ELSI meeting. In addition to talks by the heads of the genome projects in the Soviet Union, Japan, and the United States, the meeting was keynoted by Dr. James Wyngaarden, director general of the Human Genome Organization (HUGO), and I had the honor of serving as its general chairman.The goal of the meeting was to consider an array of issues that scientists, philosophers, and lawyers from around the world suggested might have international significance, with an eye to deciding three things: (1) Does the issue deserve further attention? (2) Is the issue best addressed in an international or domestic context? and (3) Do structures exist to which the issue can be referred for resolution? In the final sessions, the entire group debated proposed resolutions on the various topics and narrowed the list needing further, intensive exploration.To provide an international framework for this process, the conference [End Page 247] established a Global Steering Committee on Ethical and Social Issues in Genome Research, which will coordinate the efforts of several task forces charged with refining the tentative resolutions adopted by the conference participants on June 4. The task forces are expected to be able to complete work on some topics by the time of the steering committee's first meeting, which was described by one participant as a "check point," probably within the coming year; on other topics, the task forces will provide interim reports and arrange to continue their analysis. Several topics—less complex or more embryonic—were referred directly to the steering committee. On all issues, a major objective will be to ascertain what existing or newly created structure or structures are capable of implementing the group's recommendations and then to monitor the issue to ensure that appropriate implementation is occurring.Issues to be Explored by Task ForcesInsurance and EmploymentWhile individuals may derive medically useful information from the expanded range of genetic tests that will flow from the HGP, they could also be harmed if test results become a basis for discrimination. An area of particular concern at the conference in Bethesda was whether genetic information should be used to decide eligibility for employment or the scope and cost of health and life insurance. The complexity of this issue is increased as barriers to worker migration fall (especially in Europe) and as more firms carry on business internationally. Furthermore, questions arise about the limits of required testing and whether individuals may decline to be informed of the results of tests.The task force will not only gather information on practices and legal standards throughout the world—especially in light of the differences among nations with regard to the linkage of employment and various forms of insurance—but will also examine international anti-discrimination laws as a possible means of supplementing domestic statutes and regulations. As a starting point, the Bethesda meeting agreed on a set of principles for the task force to refine.2ForensicsAlthough their legal status is not fully resolved, DNA tests are being used increasingly in judicial proceedings and civil and criminal investigations as a highly probative means to identify people. Most forensic uses of "DNA fingerprints" are domestic, but international cooperation among investigative bodies... (shrink)

Meeting of the Minds records the proceedings of the S.I.E.P.M. conference held in Boston from June 14-16, 1996. The conference participants centred their attention on the relationships between medieval and classical modern philosophy. These relationships have been painted in dramatically different ways by those who have presented overviews of the two eras. Hans Blumenberg, in The Legitimacy of the Modern Age and his subsequent works, discovers the seeds of modernity in the medieval authors themselves. Leo Strauss and his followers see (...) a radical difference between the classical world views of the ancients and medievals and the successive layers of modern thought. These general portraits demand specifics, and the strength of the conference, whose results are contained in this volume, was that it provided many specific examinations of concrete relations between the philosophical positions of celebrated medieval and modern thinkers. Our hope is that this collection of papers will suggest the direction for further cooperative efforts on the interplay of the philosophical views represented by these two eras, and that the issues commonly debated by the medieval and early modern thinkers represented in this volume will give renewed consideration to important philosophical points that have been ignored in more recent debates. The volume contains contributions from E. Jennifer Ashworth (Waterloo, Ontario), Allan Back (Kutztown, Pennsylvania), Jos Decorte (Leuven), Thomas Dewender (Bochum), Idit Dobbs-Weinstein (Nashville), John P.Doyle (St.Louis), Jeremiah Hackett (Columbia, South Carolina), Simo Knuuttila (Helsinki), James McEvoy (Maynooth), A.Stephen McGrade (Storrs), Edward P.Mahoney (Durham, North Carolina), James D.Maliszewski (Toronto), Emily Michael (New York), Woosuk Park (Taejon, Korea), Horacio Santiago-Otero(+) (Madrid), Alison Simmons (Cambridge, Massachusetts), Jean-Luc Solere (Paris), Jose MariSoto Rabanos (Madrid), and Eileen C. Swe. (shrink)

In a society where mobility, globalization and contact with people from other cultures have become its basic descriptors, the enhancement of plurilingualism and intercultural understanding seem to be of the utmost concern. From a Positive Psychology Perspective, agency is the human capacity to affect other people positively or negatively through their actions. This agentic vision can be related to mediation, a concept rooted in the socio-cultural learning theory where social interaction is considered a fundamental cornerstone in the development of (...) cognition. Social interactions in the language learning setting may be facilitated through musical activities due to its social bonding effect. This paper tries to offer insights on how a musical-mediated experience in language learning may develop students’ interpersonal and collaborative competences to become active members of a more inclusive society. Mediation, considered as a paradigm shift in the foreign language classroom and the different out-of-class language learning possibilities, could also provide an environment where learners maximize their emotional intelligence. Our paper focuses on this paradigm shift spearheaded by the CEFR Companion Volume and the considerable repercussions it is bound to have for foreign language didactics, as cooperative tasks become central to foreign language learning. We hypothesize that mediated language learning experiences imply a socioemotional change in learners, focusing on the others, on their needs and interests, by trying to help them understand texts, concepts or facilitating communication with their peers. An intervention with a musical-mediated language learning experience was designed and implemented in the classroom. A self assessment scale with mediation descriptors and the socioemotional expertise scale (SEE) were administered. Results show that students become more mindful of their strengths, of their capacity for collaborating and team working. This leads to more awareness of their mediation skills. Students’ mediation skills correlate significantly with their socio-emotional skills, more concretely with their expressivity. The implementation of a musical-mediated experience also promoted tolerance and enhanced learners’ intrinsic motivation for language learning at the same time as they acknowledged their diversity. (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 Bush administration and Congress are in concert on the goal of developing a fleet of unmanned aircraft that can reduce both defense costs and aircrew losses in combat by taking on at least the most dangerous combat missions. Unmanned combat aerial vehicles (UCAVs) will be neither inexpensive enough to be readily expendable nor-- at least in early development-- capable of performing every combat mission alongside or in lieu of manned sorties. Yet the tremendous potential of such systems is widely (...) recognized, and allies as well as potential adversaries are moving quickly to mount their own research and development programs. The United States is committed to fielding UCAV capabilities by 2010, principally for the missions of suppression of enemy air defense and deep strike, which are among the highest risk tasks for the Air Force and naval aviation."--Overview. (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)

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)

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)

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)

The Planteome project provides a suite of reference and species-specific ontologies for plants and annotations to genes and phenotypes. Ontologies serve as common standards for semantic integration of a large and growing corpus of plant genomics, phenomics and genetics data. The reference ontologies include the Plant Ontology, Plant Trait Ontology, and the Plant Experimental Conditions Ontology developed by the Planteome project, along with the Gene Ontology, Chemical Entities of Biological Interest, Phenotype and Attribute Ontology, and others. The (...) class='Hi'>project also provides access to species-specific Crop Ontologies developed by various plant breeding and research communities from around the world. We provide integrated data on plant traits, phenotypes, and gene function and expression from 95 plant taxa, annotated with reference ontology terms. (shrink)

The Human Genome Project (HGP) represents a massive merging of science and technology in the name of all humanity. While the disease aspects of HGP-generated data have received the greatest publicity and are the strongest rationale for the project, it should be remembered that the HGP has, as its goal the sequencing of all 100,000 human genes and the accurate depiction of the ancestral and functional relationships among these genes. The HGP will thus be constructing (...) the molecular taxonomic norm for humanity. Currently the HGP genomic baseline is almost exclusively skewed toward North Atlantic European lineages through the extensive use of the Centre d’Études du Polymorphisme Humaine (CEPH) data set. More recently, the HGP has shifted to the use of volunteer donors since adequate informed consent had not been secured from the CEPH families. No evidence exists that either the CEPH families or the current volunteers are the most appropriate demographic or evolutionary lineages for the functional genomic studies that will guide production of new DNA based drugs, targeted therapeutics and gene-based diagnostics. The lack of scientific representativeness of the HGP is a serious impediment to its broad applicability. Yet this can be remedied, and five alternative sampling strategies are presented. In response to the current exclusionary design of the HGP, there is noteworthy caution and skepticism in the African American community concerning genetic studies. The Manifesto on Genomic Studies Among African Americans reflects both a desire to be systematically included in federally funded genomic studies and a desire to maintain some control over the interpretation and application of research results. Representative sampling in the HGP is seen as an international human rights issue with domestic ethical implications. (shrink)

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 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 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)

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)

The prospect of using genome technologies to modify the human germline has raised profound moral disagreement but also emphasizes the need for wide-ranging discussion and a well-informed policy response. The Hinxton Group brought together scientists, ethicists, policymakers, and journal editors for an international, interdisciplinary meeting on this subject. This consensus statement formulated by the group calls for support of genome editing research and the development of a scientific roadmap for safety and efficacy; recognizes the ethical challenges (...) involved in clinical reproductive applications of genome editing but, importantly, rejects the idea that human reproductive germline modification is necessarily morally unacceptable; and highlights the importance of meaningful engagement in discussions of genome editing and the development of regulation and oversight mechanisms to govern future uses of such technologies. (shrink)

This article considers what the implications of decertification would be for single-sex services such as domestic and sexual violence support. Some reform options attached to decertification could (re)allocate authority away from the state to organisations or individuals to determine gender criteria. What would the consequences of such re-allocation be in determining eligibility to receive or access services or excluding people on the basis of a characteristic protected under equality law? Engaging with this in the context of domestic and sexual violence (...) support service provision raises a number of questions. Firstly, does the existence of gender-based violence and/or of the effects it produces require a stable category in order to address them? What benefits may emerge from providing single-sex spaces that could not be replicated in other settings? And finally, what criteria of exclusion and inclusion are currently used to determine access to spaces beyond legal gender status? (shrink)

This book examines what value if any, the state has for the pursuit of progressive politics; and how it might need to be re-thought or reimagined to deliver transformative change. Is it possible to reimagine the state in ways that open up projects of political transformation? This interdisciplinary collection provides alternative perspectives to the 'antistatism' of much critical writing and contemporary political movement activism. Contributors explore ways of reimagining the state that attend critically to the capitalist, neoliberal, gendered and racist (...) conditions of contemporary polities, yet seek to hold onto the state in the process. Drawing on postcolonial, poststructuralist, feminist, queer, Marxist, and anarchist thinking, they consider how states might be reread and reclaimed for radical politics. At the heart of this book is state plasticity - the capacity of the state conceptually and materially to take different forms. This plasticity is central to transformational thinking and practice, and to the conditions and labour that allow it to take place. But what can reimagining do; and what difficulties does it confront? This book will appeal to academics and research students concerned with critical and transformative approaches to state theory, particularly in governance studies, politics and political theory, socio-legal studies, international relations, geography, gender/sexuality, cultural studies and anthropology. (shrink)

Aus dem Inhalt: Views from the North: Hans Petter Graver: Law, Justice and the State: Nordic Perspectives u Jacob Dahl Rendtorff: The Danish Welfare State: Philosophical Ideals and Systemic Reality u Sigri!Dur *orgeirsdottir: Feminist Ethics and Feminist Politics u Kuellike Lengi: The Situation of Human Rights in Estonia u Einar Palsson: Pythagoras and Early Icelandic Law u Law, Discourse and Rationality: Mats Flodin: Internal and External Rationality of Legal Systems u Logi Gunnarsson: A Discourse About Discourse u Hjordi!s Hakonardottir: (...) Legal Language: A Tool of Justice u Ghita Holmstrom-Hintikka: On the Use of Expert Witness in Legal Reasoning and Inquiry u Law, State and Nation: Agust H. Ing*orsson: Democracy, Bureaucracy and Marginalization of the State u Aleksander Peczenik: Law-State, Legal Certainty and Legitimacy of Law u Ove K. Pedersen/Sverre Raffnsoe: Reorganizing Society u Juha Raikka: Mill on National Sentiment u Pall Skulason: Concepts of the State and Classes of Value u Problems of Law and Rights: Britt-Mari Blegvad: How to Cope With Uncertainty: Trust and Law u Jon Wetlesen: Animal Rights or Human Duties?. (shrink)

Popular and scientific accounts of the U.S. Human Genome Project often express concern about the implications of the project for the philosophic question of free will and responsibility. However, on its standard construal within philosophy, the question of free will versus determinism poses no special problems in relation to genetic research. The paper identifies a variant version of the free will question, free will versus internal constraint, that might well pose a threat to notions of individual (...) autonomy and virtue in connection with genetic research. Whether it does depends on the extent to which the genetic basis for behavior turns on behavioral incapacities. (shrink)

In 2018, the Chinese scientist He Jiankui presented his research at the Second International Summit on Human Genome Editing in Hong Kong. While it was intended that he facilitate a workshop, he was instead called on to present his research in heritable human genome editing, where he made the announcement that he had taken great strides in advancement of his research, to the extent that he had gene-edited human embryos and that this had (...) resulted in the live births of two children. While his research ethic and methodology was interrogated, he insisted that two children, twin girls, had been born healthy and that there was another pregnancy (at the time) where birth of a third gene edited child would be imminent. This announcement generated a ripple effect in the scientific community and exposed the gaps in regulation and absence of law relating to the technology. This resulted in a flurry of activity and conversation around regulation of the technology, which scientists stated was not ready for human trials. This article reviews the Third Summit which was held in London in March 2023 and comments on the latest developments in the regulation of heritable human genome editing. (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)

The International Panel on Social Progress is an independent association of top research scholars with the goal of assessing methods for improving the main institutions of modern societies. The IPSP has produced a report consisting of twenty-two chapters in three volumes that distills the research of these scholars and outlines what the best social science has to say about positive social change. Written in accessible language by scholars across the social sciences and humanities, these volumes assess the achievements of (...) world societies in past centuries, the current trends, the dangers that we are now facing, and the possible futures in the twenty-first century. It covers the main socio-economic, political, and cultural dimensions of social progress, global as well as regional issues, and the diversity of challenges and their interplay around the world. The authors offer a cautious optimistic conclusion: multiple ideas for social progress and better policies are already available and deserve to be tested and implemented. (shrink)

Rita Bottino,1 Santosh Nagaraju,2 Vikas Satyananda,2 Hidetaka Hara,2 Martin Wijkstrom,2 Massimo Trucco,1 David KC Cooper2 1Institute of Cellular Therapeutics, Allegheny Health Network, 2Thomas E Starzl Transplantation Institute, Department of Surgery, University of Pittsburgh, Pittsburgh, PA, USA: Diabetes mellitus is increasing worldwide. Type 1 diabetes can be treated successfully by islet allotransplantation, the results of which are steadily improving. However, the number of islets that can be obtained from deceased human donors will never be sufficient to cure more than a (...) very small percentage of patients who might benefit from transplantation. Although there are some differences in glucose metabolism between pigs and humans, the use of pigs could provide an unlimited supply of islets, and the insulin produced would undoubtedly control glucose levels. Transplantation of islets into the portal vein results in islets residing in the liver; however, an early inflammatory response and rejection remain problematic, even when the recipient is receiving immunosuppressive therapy. In the long term, immunosuppressive drugs may exhibit toxicities to patients and specifically harm the islet cells. In contrast, encapsulation techniques provide islets with a physical barrier that prevents antibodies binding to the islet graft while still allowing insulin to be released into the recipient's circulation; in theory, patients receiving encapsulated grafts might not require exogenous immunosuppressive therapy. Nonhuman primates with encapsulated pig islet transplants have remained insulin-independent for several weeks, but long-term efficacy remains uncertain. Furthermore, techniques are now available to knock out genes from the pig and/or insert human genes, thus rendering the antigenic structure of pigs closer to that of humans, and providing protection from the human immune response. Islet transplantation from genetically engineered pigs has been followed by insulin independence in a small number of nonhuman primates for greater than 1 year. Neonatal islets have some advantages over adult islets in that they are easier to isolate and culture, and have the ability to proliferate during the first few months after transplantation. In 2009, the International Xenotransplantation Association set up a group to encourage and advise on clinical trials of pig islet xenotransplantation; this group's guidelines are discussed. Clinical trials of encapsulated pig islets are already under way. Keywords: diabetes, islets, pancreatic, pig, xenotransplantation. (shrink)

Despite a large and multifaceted effort to understand the vast landscape of phenotypic data, their current form inhibits productive data analysis. The lack of a community-wide, consensus-based, human- and machine-interpretable language for describing phenotypes and their genomic and environmental contexts is perhaps the most pressing scientific bottleneck to integration across many key fields in biology, including genomics, systems biology, development, medicine, evolution, ecology, and systematics. Here we survey the current phenomics landscape, including data resources and handling, and the progress (...) that has been made to accurately capture relevant data descriptions for phenotypes. We present an example of the kind of integration across domains that computable phenotypes would enable, and we call upon the broader biology community, publishers, and relevant funding agencies to support efforts to surmount today's data barriers and facilitate analytical reproducibility. (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)

On the standard interpretation, Aristotle's conception of "nous" is geared against skeptical worries about the possibility of scientific knowledge and ultimately of the knowledge of first principles. On this view, Aristotle introduces "nous" as an intuitive faculty that grasps the first principles once and for all as true in such a way that it does not leave any room for the skeptic to press his skeptical point any further. This position views Aristotelian "nous" as having an internalist justificatory role in (...) Aristotelian epistemology. In contrast, a minority (empiricist) position holds the same internalist justificatory view of "nous" but rejects its internally certifiable infallibility by stressing the connection between "nous" and Aristotelian induction. I argue that both approaches are flawed in that Aristotle's project in the "Posterior Analytics" is not to answer the skeptic on internalist justificatory grounds, but rather lay out a largely externalist "explication" of scientific knowledge. (shrink)

This is the first of three volumes containing a report from the International Panel on Social Progress. The IPSP is an independent association of top research scholars with the goal of assessing methods for improving the main institutions of modern societies. Written in accessible language by scholars across the social sciences and humanities, these volumes assess the achievements of world societies in past centuries, the current trends, the dangers that we are now facing, and the possible futures in the (...) twenty-first century. It covers the main socio-economic, political, and cultural dimensions of social progress, global as well as regional issues, and the diversity of challenges and their interplay around the world. This particular volume covers topics such as economic inequality and growth, finance and corporations, labor, capitalism, and social justice. (shrink)

In this paper, I take seriously calls for public engagement in human genome editing decision-making by endorsing the convening of a “Citizens Jury” in conjunction with the International Commission on the Clinical Use of Human Germline Genome Editing’s next summit scheduled for March 6–8, 2023. This institutional modification promises a more inclusive, deliberative, and impactful form of engagement than standard bioethics engagement opportunities, such as comment periods, by serving both normative and political purposes in the (...) quest to offer moral guidance on gene editing. In examining evidence from the Australian Citizens’ Jury on Genome Editing convened in 2021, I argue that Citizens’ Juries should work in tandem with governing institutions to preserve the role of expertise while ensuring that the diverse views of the public are incorporated into their final reports as well. First, early inclusivity allows “the people” to hold agenda setting power through helping to set resource priorities. This also makes a downstream deliberative event, such as the called for Global Citizens’ Assembly, both more likely to occur and more influential on policy. Second, Jury’s diverse composition promises substantive contributions to the Commission’s work. Third, Citizens’ Juries could help to cultivate the Commission’s trustworthiness. (shrink)

Since the mid-1990s, the international norms for global development have been redefined under non-governmental organizations’ critical e-mobilizations, powered by new media. International governmental organizations have been forced to make policy adjustments or concessions, resulting in new IGOs-NGOs policy regimes for consultative consensus building and for protecting people’s economic, social, and cultural rights for enhancing social quality. This paper examines the emerging cosmopolitanism in the information age, focusing on NGOs’ advocacy networks, to understand the new media-enhanced participatory regime for (...) global governance. It also illustrates a new form of social participation, as promoted by social quality theory, in the age of e-globalization and the information society. The paper has five parts. After outlining the globalization project threatening ESC rights, the second section examines critical engagements of NGOs and IGOs for human rights promotion. Parts three and four discuss, respectively, the struggles for ESC rights in shaping new ethics and norms for global development, and the variations of new social media mobilization. The paper ends with critical remarks on the project for larger freedom and human rights for all. (shrink)

The genome is one of the primordial elements of the human being and is responsible for human identity and its transmission to descendants. The gene as such ought not be appropriated or owned by man. However, any sufficiently complete description of a gene should be capable of being protected as intellectual property. Furthermore, all utilisations of a gene or its elements that permit development of processes or new products should be patentable. Ethics, in the sense of moral (...) action, should come into play from the very first stages of research into the human genome. Protection of intellectual and industrial property is of purely legal concern and need not provoke ethical consideration. By contrast, the use of the results of, and in particular the commercialisation of products deriving from, research into the human genome, ought to be subjected to ethical consideration and control. Considering the economic and societal stakes of such research, ethical analysis ought to be at an international level if mistakes and unforeseen risks of conflict are to be avoided. (shrink)

This is the third of three volumes containing a report from the International Panel on Social Progress. The IPSP is an independent association of top research scholars with the goal of assessing methods for improving the main institutions of modern societies. Written in accessible language by scholars across the social sciences and humanities, these volumes assess the achievements of world societies in past centuries, the current trends, the dangers that we are now facing, and the possible futures in the (...) twenty-first century. It covers the main socio-economic, political, and cultural dimensions of social progress, global as well as regional issues, and the diversity of challenges and their interplay around the world. This particular volume covers topics such as world cultures and religions, families, global health, education, and the contributions of social sciences to institutional change. (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)

The term “globalization” was popularized by Marshall McLuhan in War and Peace in the Global Village. In the book, McLuhan described how the global media shaped current events surrounding the Vietnam War [1] and also predicted how modern information and communication technologies would accelerate world progress through trade and knowledge development. Globalization now refers to a broad range of issues regarding the movement of goods and services through trade liberalization, and the movement of people through migration. Much has also been (...) written on the global effects of environmental degradation, population growth, and economic disparities. In addition, the pace of scientific development has accelerated, with both negative and positive implications for global health. Concerns for national health transcend borders, with a need for shared human security and an enhanced role for international cooperation and development [2]. These issues have significant bioethical implications, and thus a renewed academic focus on the ethical dimensions of public health is needed. Future developments in science and health policy also require a firm grounding in bioethical principles. These core principles include beneficence; nonmaleficence ; respect for persons and human dignity ; and attention to equity and social justice. According to the World Health Organization [3], global ethical approaches should monitor and update ethical norms for research, as necessary; anticipate ethical implications of advances in science and technology for health; apply internationally accepted codes of ethics; ensure that agreed standards guide future work on the human genome; and ensure that quality in health systems and services is assessed and promoted. (shrink)

This volume addresses relations between macroscopic and microscopic description; essential roles of visualization and representation in chemical understanding; historical questions involving chemical concepts; the impacts of chemical ideas on wider cultural concerns; and relationships between contemporary chemistry and other sciences. The authors demonstrate, assert, or tacitly assume that chemical explanation is functionally autonomous. This volume should he of interest not only to professional chemists and philosophers, but also to workers in medicine, psychology, and other fields in which relationships between explanations (...) based on diverse levels of description and investigation are important. (Listed on Google books). (shrink)

BackgroundGenome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.DiscussionWe explore ethical (...) issues in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations.SummaryMany ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects. (shrink)