The Epic of Evolution is a course taught at Northern Arizona University. It engages the task of formulating a new epic myth that is based on the physical, natural, social, and cultural sciences. It aims to serve the need of providing meaning for human living in the vast and complex universe that the sciences now depict for us. It is an interdisciplinary effort in an academic setting that is often divided by specializations; it focuses on values in a climate (...) of relativism; and it concentrates on an enterprise for which there are few textbooks at hand. The course is presented in three segments: the cosmos before humans appeared, the human phenomenon, and scenarios for the future of evolution. (shrink)

The rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.

Society has historically not taken a benign view of genetic disease. The laws permitting sterilization of the mentally re tarded~ and those proscribing consanguineous marriages are but two examples. Indeed as far back as the 5th-10th centuries, B.C.E., consanguineous unions were outlawed (Leviticus XVIII, 6). Case law has traditionally tended toward the conservative. It is reactive rather than directive, exerting its influence only after an individual or group has sustained injury and brought suit. In contrast, state legislatures have not been (...) inhibited in enacting statutes. Many of their products can be characterized as hasty, unnecessary, ill-conceived, and based on the heart rather than the head. Moreover the lack of expert consultation sought has also been remarkable. One state legislature, for example, has advocated immunization for sickle cell anemia! Many others have enacted laws for the screening of inborn errors of metabolism, e.g., phenylketon uria, but have poorly defined the lines of responsibility to secure compliance. A spate of specific disease-related bills has emerged in the u.S. Congress, each seeking recognition and appropriations. Sickle cell anemia, hemophilia, Cooley's anemia and Tay-Sachs disease have been among the front-runners for support. Finally, in 1975, Congress has begun to examine an omnibus bill concerning all forms of genetic disease. The bill, termed the National Genetic Diseases Act is, however, still far from being enacted. (shrink)

Genetic research has moved from Mendelian genetics to sequence maps to the study of natural human genetic variation at the level of the genome. This past decade of discovery has been accompanied by a shift in emphasis towards the ethical principles of reciprocity, mutuality, solidarity, citizenry and universality.

Transhumanism is a loosely defined movement that has developed gradually over the past two decades. It promotes an interdisciplinary approach to understanding and evaluating the opportunities for enhancing the human condition and the human organism opened up by the advancement of technology. Attention is given to both present technologies, like genetic engineering and information technology, and anticipated future ones, such as molecular nanotechnology and artificial intelligence.

In this new post-genomic age of medicine and biomedical technology, there will be novel approaches to understanding disease, and to finding drugs and cures for diseases. Hundreds of new “disease genes” thought to be the causative agents of various genetic maladies will be identified and added to the list of hundreds of such genes already identified. Based on this knowledge, many new genetic tests will be developed and used in genetic screening programs. Genetic screening is the foundation upon which reproductive (...) technologies such as pre-natal diagnosis (PND) and preimplantation genetic diagnosis (PGD) are based. Genetic information arising from the human genome may also be used in attempts to redesign the human genetic inheritance by engineering the human germline (germline engineering). In each of these technologies—PND, PGD, and germline engineering—there are serious ethical and social concerns. Moreover, all three are eugenic in nature because they strive to control which genes are passed down to future generations. The goals of this article are threefold: 1) to introduce the science behind the three technologies; 2) to give a brief overview of eugenics in the past century and show how these genetic technologies are eugenic; and 3) to present a vision of social justice that rejects the genetic determinism upon which eugenics is based and embraces a holistic, ecological view of nature and humanity. (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)

In popular articles that play down the genetical differences among human populations, it is often stated that about 85% of the total genetical variation is due to individual differences within populations and only 15% to differences between populations or ethnic groups. It has therefore been proposed that the division of Homo sapiens into these groups is not justified by the genetic data. This conclusion, due to R.C. Lewontin in 1972, is unwarranted because the argument ignores the fact that most (...) of the information that distinguishes populations is hidden in the correlation structure of the data and not simply in the variation of the individual factors. The underlying logic, which was discussed in the early years of the last century, is here discussed using a simple genetical example. (shrink)

Italian Life sciences in post-WWII faced important challenges: the reconstruction of a scientific panorama suffering heavily after two decades of Fascism and the damages of war. Modernization was not only a matter of recreating a favorable environment for research, by modernizing Italian biomedical institutions and connecting the Italian scientists with the new ideas coming from abroad. The introduction of new genetics required a new array of concepts and instruments, but also, the ability to connect to international networks and to (...) become active members of a broader scientific community. Because of the several socio-cultural issues involved (eugenics, racism, religion, politics), human genetics is a good case study in order to analyze how Italian life sciences managed the transition towards a new research system, and the influences Italian human geneticists received. The paper focuses primarily on the development of the early career of Luigi Luca Cavalli-Sforza, probably the most prominent scientist in post-WWII human genetics in Italy, and his friend and colleague Ruggero Ceppellini. In following their path, a healthy mix of local traditions and international stimuli emerges, allowing for the establishment—within and beyond national borders—of the discipline. (shrink)

The centerpiece of Aldous Huxley's Brave New World is state control of the human reproduction process as a means of ensuring social stability. Although written as fiction, recent advances in human genetic and reproductive technology promise to give us more control over our biological destiny, including procreation. Concurrently, they create new social policy dilemmas, challenge prevailing "givens" of the human condition, and, technologically, increase the possibility of centralized control over reproduction. After reviewing the current status of (...) class='Hi'>human genetic technology and discussing its use in the United States, this article analyzes the implications of these innovations for the future. (shrink)

Advancements in science and technology have not only brought hope to humankind to produce disease-free offspring, but also offer possibilities to genetically enhance the next generation’s traits and capacities. Human genetic enhancement, however, raises complex ethical questions, such as to what extent should it be allowed? It has been a great challenge for humankind to develop robust ethical guidelines for human genetic enhancement that address both public concerns and needs. We believe that research about public concerns is necessary (...) prior to developing such guidelines, yet the issues have not been thoroughly investigated in many countries, including Malaysia. Since the novel often functions as a medium for the public to express their concerns, this paper explores ethical concerns about human genetic enhancement expressed in four Malay science fiction novels namely Klon, Leksikon Ledang, Transgenesis Bisikan Rimba and Transgenik Sifar. Religion has a strong influence on the worldview of the Malays therefore some concerns such as playing God are obviously religious. Association of the negative image of scientists as well as the private research companies with the research on human genetic enhancement reflects the authors’ concerns about the main motivations for conducting such research and the extent to which such research will benefit society. (shrink)

This article seeks to reframe the ethical discussion of genetic enhancement, which is the use of genetic engineering to supply a characteristic that a parent might want in a child that does not involve the treatment or prevention of disease. I consider whether it is likely that enhancement can be successfully prohibited. If genetic enhancement is feasible, it is likely that there will be demand for it because parents compete to produce able children and nations compete to accumulate human (...) capital in skilled workers. If some parents or nations begin using genetic enhancement, this will change these competitions in ways that increase the incentives for others to use it. Therefore, a ban on genetic enhancement would be unstable, because once the ban was breached by defectors the motivation of others to uphold it would weaken, making the ban liable to collapse. The argument provides a new perspective on slippery slopes to dangerous technology. Keywords: genetic enhancement, slippery slope argumentation CiteULike Connotea Del.icio.us What's this? (shrink)

The 1986 Cold Spring Harbor Symposium was on the subject of human genetics; it was the first symposium at Cold Spring Harbor on this topic since 1964. In the opening remarks for the conference, Walter F. Bodmer first summarized the progress in this field since 1964. He then described what is presently known about the functional complexity of the human genome and discussed the case for a definitive characterization and sequencing of the human genome. The following (...) is an abridged and slightly adapted version of this talk; it is reproduced courtesy of the Cold Spring Harbor Laboratory © 1987. (shrink)

This volume investigates human genetic biobanking and its regulation in various Asian countries and areas, including Japan, Mainland China, Taiwan, Hong Kong, ...

This essay analyzes one of Germany's former premier research institutions for biomedical research, the Kaiser Wilhelm Institute for Anthropology, Human Heredity and Eugenics (KWIA) as a test case for the way in which politics and human heredity served as resources for each other during the Third Reich. Examining the KWIA from this perspective brings us a step closer to answering the questions at the heart of most recent scholarship concerning the biomedical community under the swastika: (1) How do (...) we explain why the vast majority of German human geneticists and eugenicists were willing to work for the National Socialist state and, at the very least, legitimized its exterminationist racial policy; and (2) what accounts for at least some of Germany's most renowned medically trained professionals' involvement in forms of morally compromised science that wholly transcend the bounds of normal scientific practice? Although a complete answer to this question must await an examination of other German biological research centers, the present study suggests that during the Nazi period the symbiotic relationship between human genetics and politics served to radicalize both. The dynamic between the science of human heredity and Nazi politics changed the research practice of some of the biomedical sciences housed at the KWIA. It also simultaneously made it easier for the Nazi state to carry out its barbaric racial program leading, finally, to the extermination of millions of so-called racial undesirables. (shrink)

The human gene pool displays exuberant genetic variation; this is normal for a sexual species. Even small isolated populations contain a large percentage of the total variability, emphasizing the basic genetic unity of our species. As modern man spread across the world from its African source, the genetic basis for man''s unique mental acuity was retained everywhere. Nevertheless, some geographical genetic variation such as skin color, stature and physiognomy was established. These changes were biologically relatively insignificant. Most of the (...) genetic load in the genome has been carried throughout the history of the species. There is little hope of purging all of these harmful genes; we must accept them and continue to treat their syndromes medically. All populations carry extensive genetic variation due to genes that encode variations in quantitative traits. Of greatest importance among these is ubiquitous polygenic variability in brain function and intelligence. Mental acuity is what sets us apart from the rest of the biological world. Throughout our history, genetic recombination among the many genes involved in brain function has occurred. This has provided a genetic basis for the action of natural selection that favors intelligence in meeting the demands of the environment. As environments change in the future, this type of genetic variability will continue to be a crucial resource. (shrink)

Human genetics has blossomed from an obscure biological science and explanation for rare disorders to a field that is profoundly altering health care for everyone. This thoroughly updated new edition of _Human Genetics: The Basics_ provides a concise background of gene structure and function through the lens of real examples, from families living with inherited diseases to population-wide efforts in which millions of average people are learning about their genetic selves. The book raises compelling issues concerning: • (...) The role of genes in maintaining health and explaining sickness • Genetic testing, gene therapy, and genome editing • The common ancestry of all humanity and how we are affecting our future. Written in an engaging, narrative manner, this concise introduction is an ideal starting point for anyone who wants to know more about genes, DNA, genomes, and the genetic ties that bind us all. (shrink)

During the past 20 years, the importance of human genetic information has exploded. Whether sought for medical treatment, disease prediction studies, cultural studies, or the general study of human origins, human genetic information is now viewed as crucial for scientific research and general attempts at human understanding.With the importance of genetic information have come bitter battles over its control. The demonstrated power of human genetic information has moved the issue of its “ownership” from the realm (...) of musty academic musings to protracted political and legal battles among “source” individuals, researchers, commercial concerns, government agencies, and others. Whether collected through targeted scientific studies, “discarded” biological tissue, initial charitable bequest, or other means, genetic information and the biological materials in which it is contained have become the subject of protracted legal battles for control and intense social and ethical controversy. (shrink)

Human genetics research appears to be approaching a period of re-examination due to the decades-long failure of molecular genetic research to uncover the genes presumed to underlie psychiatric disorders, psychological traits, and some common medical conditions. As currently dominant theories of genetic causation come more into question, we will see a renewed interest in reassessing the potential roles of genes and environment in these areas. To illustrate the potentially harmful and diversionary impact of emphasizing genetics over the (...) environment, the author tells a story in the form of a parable. In this parable, the citizens of a medium-size city are confronted with the task of dealing with a group of arsonists who are systematically burning down several houses each week. The Mayor argues that the best way to prevent arson is to analyze the types of wood used to build the city’s houses, with an accompanying lack of interest in arresting the arsonists. Her opponents argue that regardless of the type of wood used, the city and its citizens should prevent arson attacks by focusing attention on identifying and arresting the arsonists. The Mayor’s position prevails, and the arson attacks continue for years to come at the same time as researchers continue to study and analyze the wood used to construct the houses. Informed readers will recognize the analogous ideas, research strategies, interest groups, publications, and historical controversies related to “nature–nurture” issues, which encompass every aspect of the parable. (shrink)

The book analyses moral and legal problems of assisted reproduction providing a pluralistic approach which combines principles of procreative beneficence, procreative nonmaleficence, reproductive autonomy and rationality with the meaning and nature of the parent-child relationship as the main criterion of moral assessment.

This article considers how we should frame the ethical issues raised by current proposals for large-scale genebanks with on-going links to medical and lifestyle data, such as the Wellcome Trust and Medical Research Council's 'UK Biobank'. As recent scandals such as Alder Hey have emphasised, there are complex issues concerning the informed consent of donors that need to be carefully considered. However, we believe that a preoccupation with informed consent obscures important questions about the purposes to which such collections are (...) put, not least that they may be only haphazardly used for research —an end that would not fairly reflect the original altruistic motivation of donors, and the trust they must invest. We therefore argue that custodians of such databases take on a weighty pro-active duty, to encourage public debate about the ends of such collections and to sponsor research that reflects publicly agreed priorities and provides public benefits. (shrink)

In this essay, the author focuses on an underlying theoretical issue which she believes seriously affects our collective response to the idea of group rights in the genetic-control context. That issue is to what extent are our responses to claims of group rights hampered by our bringing to the table a model which is structured to acknowledge only individual concerns? Put another way, to what extent are our objections to group rights in this context a product of our inability to (...) imagine the idea of group rights, rather than the product of truly substantive concerns? (shrink)

Trinucleotide repeat expansions are now a well‐established mutational mechanism in human genetic disease. An unstable CAG repeat is known to be responsible for three neurodegenerative disorders: Huntington's disease, spinal and bulbar musclar atrophy and spinocerebellar ataxia type 1. Similarities in the genetics of these diseases, the size of the repeat expansions and the position of the unstable repeat within the gene (when known) suggest a common basis to the observed phenotypes. The cloning of two regions at which chromosome (...) breakage can be induced (FRAXA and FRAXE) has in each case uncovered an unstable CG‐rich triplet repeat which becomes methylated when fully expanded. In addition to these two classes of mutation, the presence of an expanded CTG repeat in the 3′ untranslated region of a protein kinase causes myotonic dystrophy. The size of the respective expansions, repeat stability, mutational origins and possible mechanisms of action are discussed. (shrink)

A challenge in human genome research is how to describe the populations being studied. The use of improper and/or imprecise terms has the potential to both generate and reinforce prejudices and to diminish the clinical value of the research. The issue of population descriptors has not attracted enough academic attention outside North America and Europe. In January 2012, we held a two-day workshop, the first of its kind in Japan, to engage in interdisciplinary dialogue between scholars in the humanities, (...) social sciences, medical sciences, and genetics to begin an ongoing discussion of the social and ethical issues associated with population descriptors. (shrink)

Many ethical concerns surrounding human genetics studies remain unresolved. We report here the situation in Cameroon.Objectives: To describe the profile of human genetic studies that used Cameroonian DNA samples, with specific focus on i) the research centres that were involved, ii) authorship, iii) population studied, iv) research topics and v) ethics disclosure, with the aim of raising ethical issues that emerged from these studies.Method: Bibliometric Studies; we conducted a PubMed-based systematic review of all the studies on (...) class='Hi'>human genetics that used Cameroonian DNA samples from 1989 to 2009.Results and Discussion: Fifty articles were identified, involving predominantly research centres from Europe (64%) and America (32%). Only 7 (14%) Cameroonian institutions and 14 (28%) Cameroonian authors were associated with these publications.At least 52% of publications were devoted to population genetics (variation/migration patterns) amongst 30 Cameroonian ethnic groups. Very few studies concerned public health related genetic issues and only 5 (10%) references were found for hemoglobinopathies like sickle cell anaemia. Almost all DNA samples are ‘banked’ outside of the African continent.Capacity building, rights to the genetic information and benefits to the individuals, communities and populations who contribute to these studies are addressed.Conclusions: 1) Our data suggests the need for a wider debate towards building capacity and addressing ethical issues related to human genomic research in sub-Saharan Africa and specifically in Cameroon; 2) National ethical guidelines and regulations concerning the collection, use and storage of human DNA are urgently needed in Cameroon. (shrink)

Within the context of the discussion about value-free science ideal, Heather Douglas claims that in several cases non-epistemic values are needed for good reasoning in science. In this article I aim at recovering her viewpoint in order to examine the research driving to the Genetic Grandparent Inclusion-Probability Index, a crucial element to restitute the identity of children who were abducted during Argentinean dictatorship. Thus, my purposes are to reconstruct Douglas´ main theoretical contributions, specifically her reasons to reject the ideal as (...) well as the distinction between direct and indirect roles for values in science; and to analyze the scientific paper resulting from the “Grandparent-Inclusion Index” research. The main hypothesis is that several decisions of this research, particularly the establishment of what is to be considered sufficient evidence, should be explained by reference to social, ethical and political values. Both because of the non-epistemic consequences of the inquiry related to its inductive risk and because such inquiry is a case in which there is legitimate and necessary integration between epistemic and non-epistemic values and that it is also a case in which Douglas’ criteria of objectivity is reached. By virtue of these reasons, the significance of Douglas’ contribution to the analysis of the relationship between science and politics is emphasized. (shrink)

Within the context of the discussion about value-free science ideal, Heather Douglas claims that in several cases non-epistemic values are needed for good reasoning in science. In this article I aim at recovering her viewpoint in order to examine the research driving to the Genetic Grandparent Inclusion-Probability Index, a crucial element to restitute the identity of children who were abducted during Argentinean dictatorship. Thus, my purposes are to reconstruct Douglas´ main theoretical contributions, specifically her reasons to reject the ideal as (...) well as the distinction between direct and indirect roles for values in science; and to analyze the scientific paper resulting from the “Grandparent-Inclusion Index” research. The main hypothesis is that several decisions of this research, particularly the establishment of what is to be considered sufficient evidence, should be explained by reference to social, ethical and political values. Both because of the non-epistemic consequences of the inquiry related to its inductive risk and because such inquiry is a case in which there is legitimate and necessary integration between epistemic and non-epistemic values and that it is also a case in which Douglas’ criteria of objectivity is reached. By virtue of these reasons, the significance of Douglas’ contribution to the analysis of the relationship between science and politics is emphasized. (shrink)

The author reviews the arguments made by Mark Hanson, James Keenan, S.J., and Joel Shuman in this issue. In the first section, she argues that they offer a significant contribution toward an understanding of the inner logic of a new trend in contemporary medicine, genetic engineering. However, she criticizes the authors for relying excessively on procedural guidelines and for failing to bring the practical realities of medicine and technology to bear on theory. She argues that more concrete guidelines, which are (...) ultimately grounded in a Christian conception of the person and on the commandment to love, are necessary. Writing from the Roman Catholic perspective, the author argues that the distinction between genetic enhancement and gene therapy is essential, despite the criticisms which have been offered of this distinction. Understanding this distinction will be critical for identifying as licit only those forms of genetic manipulation which respect the dignity of the human person. (shrink)

ArgumentThis paper analyzes the research strategies of three different cases in the study of human genetics in Mexico – the work of Rubén Lisker in the 1960s, INMEGEN's mapping of Mexican genomic diversity between 2004 and 2009, and the analysis of Native American variation by Andrés Moreno and his colleagues in contemporary research. We make a distinction between an approach that incorporates multiple disciplinary resources into sampling design and interpretation (unpacking), from one that privileges pragmatic considerations over more (...) robust multidisciplinary analysis (flattening). These choices have consequences for social, demographic, and biomedical practices, and also for accounts of genetic variation in human populations. While the former strategyunpacksfine-grained genetic variation – favoring precision and realism, the latter tends toflattenindividual differences and historical depth in lieu of generalization. (shrink)

This paper reports on a recent symposium seminar series entitled ‘Governing genetic databases – collection, storage and use’ hosted by the Ethox Centre at the University of Oxford. It outlines the inadequacy of the current UK framework for governing genetic databases and biobanks and some of the implications of this. It then briefly describes and reflects on each of the five symposium papers.

This special issue of the Modern Law Review addresses a range of key issues - conceptual, ethical, political and practical - arising from the regulatory ...

Advances in understanding genetic disorders have been rapid in the last few years and with them the need and desire for genetic counselling have grown. Almost simultaneously, particularly in the USA, several large screening programmes have been initiated to screen large numbers of people who may be carriers of such deleterious genes as those of Tay-Sachs disease and sickle cell anaemia. The authors of this paper, clinical medical students at University College Hospital, London, spent some time studying the ethical issues (...) raised. The first part of their study, which is not published here, relates to the biochemistry of certain genetic disorders, so leading up to the aspect of the subject which must concern readers of this journal, genetic counselling. At present genetic counselling is generally the province of the medical practitioner working with clinical biochemists, and in this paper their function is described and how programmes of screening for carriers are designed. Whether the subjects of the screening tests are found to be 'innocent' or 'guilty' psychological problems confront them, and of these the genetic counsellor must be aware. In fact the range of ethical problems raised by such counselling is wide and can only be sketched in this article. (shrink)