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)

The role of fixed charges present at the surface of biological membranes is usually described by the Gouy-Chapman-Grahame theory of the electric double-layer where the Grahame equation is applied independently on each side of the membrane and where the capacitive charges are disregarded. In this article, we generalize the Gouy-Chapman-Grahame theory by taking into account both intrinsic charges and capacitive charges, in the density value of the membrane surface charges. In the first part, we show that capacitive charges couple electrostatic (...) potentials present on both sides of the membrane. The intensity of this coupling depends both on the value of the membrane specific capacitance and the transmembrane electric potential difference. In the second part, we suggest some physiological implications of membrane electric double-layers. (shrink)

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)

Signs and States, programme financé par l'ERG (European Research Council), a pour but d'explorer la sémiologie de l'Etat du XIIIe siècle au milieu du XVIIe siècle. Textes, performances, images, liturgies, sons et musiques, architectures, structures spatiales, tout ce qui contribue à la communication des sociétés politiques, tout ce qu'exprime l'idéel des individus et leur imaginaire, est ici passé au crible dans trois séries de rencontres dont les actes ont été rassemblés dans une collection, Le pouvoir symbolique en Occident (1300-1640). Ces (...) volumes, adoptant une perspective pluridisciplinaire et comparative dans une visée de long terme, combinent études de cas, analyses conceptuelles et réflexions plus théoriques. Et les réponses à ce questionnaire, issu d'une réflexion sur une histoire culturelle poursuivie sur plus de cinq siècles, remettent en cause une histoire de l'Occident latin où l'on opposerait Eglise et Etat : la mutation culturelle engendrée par la réforme grégorienne qui, tout en assurant d'abord le triomphe de la papauté, a donné à l'Etat moderne les moyens d'assurer sa propre légitimité en créant les conditions d'une révolution du système de communication. Elle engendre un partage du pouvoir symbolique et des processus de légitimation avec l'Etat : la capacité de ce dernier à se légitimer par le consentement de la société politique en dehors de la contingence religieuse est une spécificité de l'Occident latin, clé de l'essor des Etats modernes européens. (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.

This book, written by four internationally renowned bioethicists and first published in 2000, was the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. (...) The book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science. (shrink)

Building on the emerging literature on the ethics of social enterprises (SEs), this paper advances the underexplored role of frontline workers (FLWs) as embedded agents at the interface between communities and SEs. Specifically, we uncover the subjectivity of FLWs as they navigate moral ambiguities while performing their professional roles, dealing with rules and regulations within the organizational hierarchy and living as members of local communities. Based on an inductive case study of a microfinance organization in Cameroon, we find that FLWs (...) engage in three rationalization strategies: cautious disengaging, safeguarding self-interest, and justifying relevance. Our findings offer a better understanding of the ethics of SEs by unpacking the subjectivity of FLWs. We highlight a bottom-up account of caring SEs, identify a boundary condition to subjectivity, and present a nuanced view of FLWs in embedded organizations. We also discuss the practical implications for SEs to improve their compassion and cater for the mental wellbeing of FLWs. (shrink)

The essays in this collection examine developments in three fundamental biological disciplines--embryology, evolutionary biology, and genetics--in conflict with each other for much of the twentieth century. They consider key methodological problems and the difficulty of overcoming them. Richard Burian interweaves historical appreciation of the settings within which scientists work, substantial knowledge of the biological problems at stake and the methodological and philosophical issues faced in integrating biological knowledge drawn from disparate sources.

Understanding how scientific activities use naming stories to achieve disciplinary status is important not only for insight into the past, but for evaluating current claims that new disciplines are emerging. In order to gain a historical understanding of how new disciplines develop in relation to these baptismal narratives, we compare two recently formed disciplines, systems biology and genomics, with two earlier related life sciences, genetics and molecular biology. These four disciplines span the twentieth century, a period in which the (...) processes of disciplinary demarcation fundamentally changed from those characteristic of the nineteenth century. We outline how the establishment of each discipline relies upon an interplay of factors that include paradigmatic achievements, technological innovation, and social formations. Our focus, however, is the baptism stories that give the new discipline a founding narrative and articulate core problems, general approaches and constitutive methods. The highly plastic process of achieving disciplinary identity is further marked by the openness of disciplinary definition, tension between technological possibilities and the ways in which scientific issues are conceived and approached, synthesis of reductive and integrative strategies, and complex social interactions. The importance – albeit highly variable – of naming stories in these four cases indicates the scope for future studies that focus on failed disciplines or competing names. Further attention to disciplinary histories could, we suggest, give us richer insight into scientific development. (shrink)

By exploring whether nanotechnologies have the potential to generate green innovations, we consider the paradox between the negative and positive side-effects that could come with the development of nanotechnologies. Starting from the conceptual framework of green product innovation, the potential green innovation activity of more than 14,000 firms of the nanotech sector is investigated. Using a query-search method, their patenting activity is explored. Results first show that there is an increasing trend toward the creation of fundamental green knowledge by firms (...) involved in nanotechnologies; second, they demonstrate that energy efficiency is the main driver of green knowledge creation in the sector and third they reveal the main characteristics of nanotech firms creating green knowledge. Beyond their contribution to the debate between positive and negative outcomes of nanotechnology developments, these results also enrich the conceptual framework of green product innovation—a key route to achieving sustainability at the same time as growth. (shrink)

From a twenty-first century partnership between bioethics and neuroscience, the modern field of neuroethics is emerging, and technologies enabling functional neuroimaging with unprecedented sensitivity have brought new ethical, social and legal issues to the forefront. Some issues, akin to those surrounding modern genetics, raise critical questions regarding prediction of disease, privacy and identity. However, with new and still-evolving insights into our neurobiology and previously unquantifiable features of profoundly personal behaviors such as social attitude, value and moral agency, the difficulty (...) of carefully and properly interpreting the relationship between brain findings and our own self-concept is unprecedented. Therefore, while the ethics of genetics provides a legitimate starting point - even a backbone - for tackling ethical issues in neuroimaging, they do not suffice. Drawing on recent neuroimaging findings and their plausible real-world applications, we argue that interpretation of neuroimaging data is a key epistemological and ethical challenge. This challenge is two-fold. First, at the scientific level, the sheer complexity of neuroscience research poses challenges for integration of knowledge and meaningful interpretation of data. Second, at the social and cultural level, we find that interpretations of imaging studies are bound by cultural and anthropological frameworks. In particular, the introduction of concepts of self and personhood in neuroimaging illustrates the interaction of interpretation levels and is a major reason why ethical reflection on genetics will only partially help settle neuroethical issues. Indeed, ethical interpretation of such findings will necessitate not only traditional bioethical input but also a wider perspective on the construction of scientific knowledge. (shrink)

In this paper, I wish to challenge theory-biased approaches to scientific knowledge, by arguing for a study of theorizing, as a cognitive activity, rather than of theories, as abstract structures independent from the agents’ understanding of them. Such a study implies taking into account scientists’ reasoning processes, and their representational practices. Here, I analyze the representational practices of geneticists in the 1910s, as a means of shedding light on the content of classical genetics. Most philosophical accounts of classical (...) class='Hi'>genetics fail to distinguish between the purely genetic, or Mendelian level, and the cytological one. I distinguish between them by characterizing them in terms of their respective associated representational practices. I then present how the two levels were articulated within Morgan’s theory of crossing-over, and I describe the representational technique of linkage mapping, which embodies the “merging” of the Mendelian and cytological levels. I propose an analysis of the mapping scheme, as a means of enlightening the conceptual articulation of Mendelian and cytological hypotheses within classical genetics. Finally, I present the respective views of three opponents to Morgan in the 1910s, who had a different understanding of the articulation of cytology and Mendelism, and entertained different views concerning the role and proper interpretation of maps. I propose to consider these diverging perspectives as instantiating what I call different “versions” of classical genetics. (shrink)

In a recent paper, William K. Goosens objects to the arguments I set out some time ago attacking the logical empiricist analysis of reduction as applied to genetics. In these works I did not argue against the claim that Mendelian genetics was being reduced to molecular biology. Nor did I conclude, as Goosens asserts, that in the case of genetics, “reduction is insignificant”. To the contrary, I repeatedly stated that, “given our pre-analytic intuitions about reduction,” the reduction (...) of Mendelian to molecular genetics “is a case of reduction, a paradigm case”. And in agreement with Kenneth Schaffner I argued that reduction “in some very important, pre-analytic sense has taken place and is taking place in genetics”. The target of my objections to reduction in genetics was not “reduction” in some pre-analytic sense. Nor was it the various explications which have appeared since. Rather it was the notion of theory reduction set out a generation ago by such logical empiricists as Ernest Nagel, The particular version of this analysis which I chose to attack was that presented by Schaffner ; for Schaffner's later views, see his. I chose Schaffner's explication to attack because I thought it was the best of its kind and because it was the only defense of the logical empiricist analysis at the time which used genetics as one of its chief examples. Contrary to Goosens' assumption, in criticizing Schaffner's explication, I did not thereby “endorse” it. (shrink)

This paper discusses the results of a survey of medical and paramedical opinion relating to various difficult ethical issues in clinical genetics. These include the confidentiality of the doctor-patient relationship, prenatal diagnosis and termination, and Huntington's chorea. It is suggested that this method provides a useful means of assessing what is ethically acceptable in contemporary society.

Abstract“Psychological essentialism” refers to our tendency to view the natural world as emerging from the result of deep, hidden, and internal forces called “essences.” People tend to believe that genes underlie a person’s identity. People encounter information about genetics on a regular basis, as through media such as a New York Times piece “Infidelity Lurks in Your Genes” or a 23andMe commercial showing people acquiring new ethnic identities as the result of their genotyping. How do people make sense of (...) new scientific findings that are inherently complex if they don’t have years of specialized training and education at their disposal? Given the substantial overlap between a lay understanding of genetics and lay intuitions about essences, we argue that, when most people are thinking about genes, they are not really thinking about genes in the complex ways that good scientists are. Combating people’s essentialist biases can be a formidable challenge. Although we have identified some promising results of trying to reduce people’s genetic essentialist tendencies, there is still much to learn about how these essentialist biases can be countered. It is important to help people understand genetic information so they are able make well‐informed decisions about their lives. (shrink)

Science education researchers have long advocated the central role of the nature of science for our understanding of scientific literacy. NOS is often interpreted narrowly to refer to a host of epistemological issues associated with the process of science and the limitations of scientific knowledge. Despite its importance, practitioners and researchers alike acknowledge that students have difficulty learning NOS and that this in part reflects how difficult it is to teach. One particularly promising method for teaching NOS involves an explicit (...) and reflective approach using the history of science. The purpose of this study was to determine the influence of a historically based genetics unit on undergraduates’ understanding of NOS. The three-class unit developed for this study introduces students to Mendelian genetics using the story of Gregor Mendel’s work. NOS learning objectives were emphasized through discussion questions and investigations. The unit was administered to undergraduates in an introductory biology course for pre-service elementary teachers. The influence of the unit was determined by students’ responses to the SUSSI instrument, which was administered pre- and post-intervention. In addition, semi-structured interviews were conducted that focused on changes in students’ responses from pre- to post-test. Data collected indicated that students showed improved NOS understanding related to observations, inferences, and the influence of culture on science. (shrink)

Taking reduction in the traditional deductive sense, the programmatic claim that most of genetics can be reduced by molecular genetics is defended as feasible and significant. Arguments by Ruse and Hull that either the relationship is replacement or at best a weaker form of reduction are shown to rest on a mixture of historical and logical confusions about the nature of the theories involved.

Background: Genetics research is controversial in Native American communities, and the disposition and ownership of biological specimens are central issues. Within Native communities, there is considerable variety in tribal members’ views. This article reports the results from an ethnographic study conducted with a Native American community in the southwestern United States. The purpose of this study was to examine the relationship (past and present) between the tribe and biomedical/genetics research. Methods: Qualitative interviews were conducted with 53 members of (...) a Native American community. Interviewees were purposively recruited to include an approximately equal number of past research participants and nonparticipants, as well as individuals with and without diabetes. Tribal members were also asked whether they identified as a “traditional person,” an emic category used in the community. Results: Tribal members’ views on specimen disposition were linked with their identification as a traditional or nontraditional person. Individuals identifying as traditional people were more likely to believe that biological specimens should be returned at the end of a study and should not be used after the research participant's death, and that they were the property of the individual who provided them. These perspectives were related to broader concerns about fragmentation of the body-self. Conclusions: Through gaining an understanding of the cultural logic related to specimen disposition, researchers may be able to work more effectively with Native American communities on developing procedures for genetics studies. The process of informed consent and other study procedures can be adapted to be culturally respectful of Native American communities. (shrink)

Sixty‐one million Americans and approximately a billion people worldwide live with some form of disability that limits one or more major life activities. The field of precision medicine continues to grapple with how to best serve disability communities. In this paper, we suggest that precision medicine faces an ethical tension between its goal to treat or cure disabling conditions and views that consider disability as a marginalized identity. We appeal to the concepts of recognition justice and distributive justice to argue (...) that the ELSI community should take a more proactive role in promoting disability inclusion in precision medicine's practice and research. We also highlight two priorities for the ELSI community moving forward: facilitating greater collaboration between genetics and genomic professionals and disability communities and advocating for inclusive research design and disability accommodations in the research process. (shrink)

Using the two cases of the Icelandic Health Sector Database and Russian initiatives in biobanking, the article criticizes the view of narratives and imaginaries as a sufficient and unproblematic means of shaping public understanding of genetics and justifying population-wide projects. Narrative representations of national biobanking engage particular imaginaries that are not bound by the universal normative framework of human rights, promote affective thinking, distract the public from recognizing and discussing tangible ethical and socioeconomic issues, and harm trust in science (...) and technology. In the Icelandic case, the presentation of the project in association with national imaginaries concealed its market identity and could lead to the commodification of biodata. In the Russian case, framing in terms of "genetic sovereignty" and "civilizational code" offers pretexts for state securitization. Adherence to normative framework of human rights and public discussion of genetics in an argumentative and factual mode can counter these trends. (shrink)

In this paper I provide a novel argument against the claim that classical genetics is being reduced to molecular genetics. Specifically, I demonstrate that reductionists must subscribe to the unargued and problematic thesis that molecular genetics is 'independent' of classical genetics. I also argue that several standard antireductionist positions can be faulted for unnecessarily conceding the Independence Thesis to the reductionists. In place of a 'tale of two sciences', I offer a 'heroic' stance that denies classical (...) genetics is being reduced, yet sees classical and molecular genetics as fundamentally unified. (shrink)

This book, written by four internationally renowned bioethicists and first published in 2000, was the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. (...) The book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science. (shrink)

Background The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research studies using tissue collected from a forensic post-mortem were recently initiated at our institution and were the first of their kind to be conducted in Cape Town, South Africa. Main body This article discusses some of the ethical challenges that were encountered in these research (...) projects. Among these challenges was the adaptation of research workflows to fit in with an exceptionally busy service delivery that is operating with limited resources. Whilst seeking guidance from the literature regarding research on deceased populations, it was noted that next of kin of decedents are not formally recognised as a vulnerable group in the existing ethical and legal frameworks in South Africa. The authors recommend that research in the forensic mortuary setting is approached using guidance for vulnerable groups, and the benefit to risk standard needs to be strongly justified. Lastly, when planning forensic genetics research, consideration must be given to the potential of uncovering incidental findings, funding to validate these findings and the feedback of results to family members; the latter of which is recommended to occur through a genetic counsellor. Conclusion It is hoped that these experiences will contribute towards a formal framework for conducting forensic genetic research in medico-legal mortuaries in South Africa. (shrink)

The history of research on the genetics of intelligence is fraught with social bias. During the eugenics era, the hereditary theory of intelligence justified policies that encouraged the proliferation of favored races and coercively stemmed procreation by disfavored ones. In the 1970s, Berkeley psychologist Arthur Jensen argued that black students’ innate cognitive inferiority limited the efficacy of federal education programs. The 1994 controversial bestseller The Bell Curve, by Richard J. Herrnstein and Charles Murray, rehashed the claim that race and (...) class disparities stem from immutable differences in inherited intelligence, which could not be eliminated through social interventions. Today most scientists studying the genetics of intelligence distance themselves from this history of social bias by arguing that their research need not investigate intellectual differences between social groups. Rather, they argue, examining the heritability of intelligence can be socially neutral and may even help to reduce social inequities. I argue, however, that research on the genetics of intelligence cannot be socially neutral. Even if we divorce the heritability of intelligence from a eugenicist mission, measuring intelligence remains useful only as a gage of individuals’ appropriate positions in society. Research into the genetics of intelligence ultimately helps to determine individuals’ inherited capacity for particular social positions, even when researchers aim to modify the effects of inheritance. (shrink)

This paper considers the relevance of human genetics as a case study through which links between bioethics and sport ethics have developed. Initially, it discusses the science of gene-doping and the ethics of policy-making in relation to future technologies, suggesting that the gene-doping example can elucidate concerns about the ethics of sport and human enhancement more generally. Subsequently, the conceptual overlap between sport and bioethics is explored in the context of discussions about doping. From here, the paper investigates the (...) ethics of gene-doping, arguing that a straightforward mapping of medical ethics onto sport ethics is not justified. In conclusion, it argues that gene-doping is consistent with a broader ethics of enhancement within elite sports. Moreover, the increased legitimacy of lifestyle medicine in society is likely to reduce the relevance of an anti-doping programme that is concerned with protecting the integrity of an alleged natural athlete. (shrink)

Explanations in genetics have intriguing aspects to both biologists and philosophers, and there is no account that satisfactorily elucidates such explanations. The aim of this article is to analyze the kind of explanations usually given in Classical (Transmission) Genetics (CG) and to present in detail the application of an account of explanation as ampliative, specialized nomological embedding to elucidate the such explanations. First, we present explanations in CG in the classical format of inferences with the explanans as the (...) premises and the explanandum as the conclusion and compare them with explanations in other paradigmatic explanatory fields such as Classical Mechanics. Second, we summarize the main aspects discussed in the literature with regard the peculiarities of genetic explanations. Third, we introduce the account of scientific explanation as ampliative, specialized nomological embedding making use of Sneedian structuralism, in particular the notions of theory-net, fundamental law or guiding principle, specialization, and special laws. Finally, we apply this account to the case of CG and show that this analysis sheds light to the intriguing aspects of genetic explanations and remove most of their alleged oddities. (shrink)

Advances in genetic technology in general and medical genetics in particular will enable us to intervene in the process of human biological development which extends from zygotes and embryos to people. This will allow us to control to a great extent the identities and the length and quality of the lives of people who already exist, as well as those we bring into existence in the near and distant future. Genes and Future People explores two general philosophical questions, one (...) metaphysical, the other moral: (1) How do genes, and different forms of genetic intervention (gene therapy, genetic enhancement, presymptomatic genetic testing of adults, genetic testing of preimplantation embryos), affect the identities of the people who already exist and those we bring into existence? and (2) How do these interventions benefit or harm the people we cause to exist in the near future and those who will exist in the distant future by satisfying or defeating their interest in having reasonably long and disease-free lives? Genes and Future People begins by explaining the connection between genes and disease, placing genetic within a framework of evolutionary biology. It then discusses such topics as how genes and genetic intervention influence personal identity, what genetic testing of individuals and the knowledge resulting from it entails about responsibility to others who may be at risk, as well as how gene therapy and genetic enhancement can affect the identities of people and benefit or harm them. Furthermore, it discusses various moral aspects of cloning human beings and body parts. Finally, it explores the metaphysical and moral implications of genetic manipulation of the mechanisms of aging to extend the human life span.The aim Genes and Future People is to move philosophers, bioethicists, and readers in general to reflect on the extent to which genes determine whether we are healthy or diseased, our identities as persons, the quality of our lives, and our moral obligations to future generations of people. (shrink)

The recent literature in philosophy of biology has drawn attention to the different sorts of explanations proffered in the biological sciences—we have molecular, biomedical, and evolutionary explanations. Do these explanations all have a common structure or relation that they seek to capture? This paper will answer in the negative. I defend a pluralistic and pragmatic approach to explanation. Using examples from classical population genetics, I argue that formal demonstrations, and even strictly “mathematical truths,” may serve as explanatory in different (...) historical contexts. (shrink)

The causal nature of evolution is one of the central topics in the philosophy of biology. The issue concerns whether equations used in evolutionary genetics point to some causal processes or purely phenomenological patterns. To address this question the present article builds well-defined causal models that underlie standard equations in evolutionary genetics. These models are based on minimal and biologically plausible hypotheses about selection and reproduction, and generate statistics to predict evolutionary changes. The causal reconstruction of the evolutionary (...) principles shows adaptive evolution as a genuine causal process, where fitness and selection are both causes of evolution. 1 Introduction2 The Philosophical Puzzle3 Causal Models4 Causal Foundations of Evolutionary Genetics4.1 Univariate quantitative genetics model4.1.1 The causal graph4.1.2 Structural equations4.1.3 Deriving evolutionary transition functions4.2 One-locus population genetics model5 Evolution as a Causal Process5.1 Selection as a causal process5.2 Causes of evolutionary change6 Conclusion. (shrink)