This chapter contains sections titled: Promise and Disappointment Ethical Issues Resource Allocation References.

In 1997, after long social debates, the Japanese government enacted a law on organ transplantation from brain-dead bodies. Since 1993, on gene therapy, administrative agencies have issued a series of guidelines. This study seeks to elucidate when people became aware of the issues and when they formed their opinions on organ transplant and gene therapy. At the same time, it aims to examine at which point in time experts, those in university ethical committees and in academic (...) societies, consider these technologies became accepted among the public. A self-administered questionnaire was sent by mail to a stratified random sampling of 3000 people nationwide in Japan. Another questionnaire was sent both to the member societies of the Japanese Association of Medical Sciences and to the ethical committees of all the medical schools in Japan. Results of the surveys indicated that many of the public remained undecided on the desirability of organ transplant or gene therapy at the time of enactment of official guidelines. A substantial part of them formed their opinions in subsequent periods, especially around the time of first implementation and thereafter. Experts of the academic societies and of the university ethical committees regarded the time of implementation as an important factor in the acceptance of the technologies in society. Since many people formed their opinion during the period of technological implementation, communications efforts to facilitate public understanding of science and technology, as well as to advance practical discussion on policy alternatives in this period can play a key role in determining the fate of technological innovation and ethical debates in medicine. (shrink)

In this paper, we apply the perspective of intra-organismal ecology by investigating a family of ecological models suitable to describe a gene therapy to a particular metabolic disorder, the adenosine deaminase deficiency (ADA-SCID). The gene therapy is modeled as the prospective ecological invasion of an organ (here, bone marrow) by genetically modified stem cells, which then operate niche construction in the cellular environment by releasing an enzyme they synthesize. We show that depending on the chosen order (...) (a choice that cannot be made on \textit{a priori} assumptions), different kinds of dynamics are expected, possibly leading to different therapeutic strategies. This drives us to discuss several features of the extension of ecology to intra-organismal ecology. (shrink)

According to a recent suggestion, the names of gene taxa should be conceived of as referring to individuals with concrete genes as their parts, just as the names of biological species are often understood as denoting individuals with organisms as their parts. Although prima facie this suggestion might advance the debate on gene concepts in a similar way as the species-are-individuals thesis advanced the debate on species concepts, I argue that the principal arguments in support of the (...) class='Hi'>gene-individuality thesis are much less compelling than the parallel arguments in the species case. In addition, I argue that the notion of biological function invoked in the gene-individuality thesis (selected effect) is not the one that biologists actually use when individuating genes. Contra the gene-individuality thesis, I argue that gene names refer to kinds, defined primarily (though not exclusively) by causal-role functions. (shrink)

In 1956, I decided to apply my experience in microbial genetics to developing analogous systems for human cell lines, including the selection of mutants with either a loss or gain of a biochemical function. For instance, mutants resistant to azahypoxanthine showed a loss of the HPRT enzyme (hypoxanthine phosphoribosyl transferase), whereas gain of the same enzyme was accomplished by blocking de novo purine biosynthesis with aminopterin, while supplying hypoxanthine and thymine (HAT selection). Using HAT selection, we: (i) genetically transformed HPRT− (...) mutant cells to HPRT+ wild type by using DNA extracted from HPRT+ cells, and (ii) selected HPRT+ hybrid cells by fusing HPRT− D98/AH2 cells with skin cells. These approaches, which we dubbed in 1962 as a [first step toward gene therapy], contributed to the later development of (i) cell fusion techniques, (ii) the development of monoclonal antibodies, (iii) routine transformation of mammalian cells with cloned genes, and (iv) methods for creating transgenic organisms. (shrink)

With pre-implantation genetic diagnosis (PGD), genetic testing and selective transfer of embryos is possible. In the future, germ-line gene therapy (GLGT) applied to embryos before implantation, in order to introduce missing genes or replace mutant ones, may be possible. The objective of this dissertation is to analyse moral aspects of these technologies, as described by eighteen British, Italian and Swedish gynaecologists and geneticists. The objective is systematised into three parts: research interviews and qualitative analysis, philosophical analysis, and elaboration (...) of a framework that supports the combination of analytic methods. PGD was described as positive since it enabled some couples at risk for a genetic disease to have a child without the disease. PGD was described as in different senses ‘better’ than methods for prenatal diagnosis and selective termination of pregnancy. It was also described as positive since it provided couples at risk with one more option, even if it did not result in the birth of a healthy child. However, interviewees were concerned about the difficulty of defining and evaluating genetic disease. They were also concerned about patients’ choices, and about exaggerated use or misuse. Whereas PGD gave rise to ambivalence in terms of how to understand, describe and evaluate it, GLGT was often described as unrealistic or undesirable. The results of the qualitative analysis are used in a philosophical analysis of the concepts of choice, autonomous choice, ambivalence, trust and ambivalence in trust relations. A set of distinct characteristics of each concept are elaborated. The results of the philosophical analysis are used in the discussion of the results of the qualitative analysis. The study shows that the technologies imply both ‘new’ ways to perform ‘old’ medical practices and ‘new’ practices. Old moral questions are reformulated. New moral questions are added. Against the background of this, the concept of genetic identity is discussed. Key words: empirical ethics, pre-implantation genetic diagnosis, germ-line gene therapy, qualitative research, philosophical analysis, medical progress, genetic disease, choice, autonomous choice, ambivalence, trust, genetic identity. (shrink)

Informed by a search of the literature about the usage of genetic testing information (GTI) by insurance companies, this paper presents a practical ethical analysis of several distinct public policy options that might be used to govern or constrain GTI usage by insurance providers. As medical research advances and the extension to the Human Genome Project (2016, https://en.wikipedia.org/wiki/human_genome_project_-_write) moves to its fullness over the next decade, such research efforts will allow the full synthesis of human DNA to be connected to (...) predictive health dispositions. As testing costs fall, there will be ever more pressure for citizens to disclose GTI. Genetic testing information is integral to future medical care because it can be used to better assess individually tailored medical therapies as well as to allow a more informed risk analysis by the insurance industry, which in some countries such as the USA underwrites a majority of citizen medical expenses. As discussed in this examination, the revelation of people’s uniquely personal GTI to insurers has enormous societal implications. The major contribution of the paper is to offer policy makers and concerned citizens a nuanced articulation of the basic options to regulate GTI, with a special consideration for ethical fairness and equity. As genetic-based medicine blossoms and pressures to reduce healthcare costs increase, there will be an ever greater impetus for countries to revisit their genetic testing policies. Organizations and policy makers striving to create GTI oversights perceived to be both “fair and effective” need to be aware of the ethical perspectives discussed in this paper. (shrink)

Eugenics can be defined as the use of science applied to the qualitative and quantitative improvement of the human genome. The subject was initiated by Francis Galton with considerable support from Charles Darwin in the latter half of the 19th century. Its scope has increased enormously since the recent revolution in molecular genetics. Genetic files can be easily obtained for individuals either antenatally or at birth; somatic gene therapy has been introduced for some rare inborn errors of (...) metabolism; and gene manipulation of human germ-line cells will no doubt occur in the near future to generate organs for transplantation. The past history of eugenics has been appalling, with gross abuses in the USA between 1931 and 1945 when compulsory sterilization was practised; and in Germany between 1933 and 1945 when mass extermination and compulsory sterilization were performed. To prevent such abuses in the future statutory bodies, such as a genetics commission, should be established to provide guidance and rules of conduct for use of the new information and technologies as applied to the human genome. (shrink)

This study was concerned with the clarification of the experience of pivotal moments in therapy. By pivotal moment is understood an event within the therapeutic process that leads to enduring change experienced as an important improvement in the life-experience of the client. Retrospective descriptions of a therapeutic process were obtained from three clients in which a distinguishable chain of events could be discerned that the clients identified as a pivotal moment. The descriptive material was analyzed according to the descriptive (...) phenomenological psychological method developed by Amedeo Giorgi on the basis of the philosophical phenomenology of Husserl and Merleau-Ponty. The results show that the pivotal moment is experienced as a figural moment within the therapeutic process where a serious challenge to old assumptions takes place, necessitating a break from old cognitive, affective and behavioral patterns in a context of trust and safety within the therapeutic relationship. (shrink)

Homology has been one of, if not the most, fecund concepts which has been used towards the understanding of the genomes of the model organisms. The evidence for this claim can be supported best with an examination of current research in comparative genomics. In comparative genomics, the information of genes or segments of the genome, and their location and sequence, are used to search for genes similar to them, known as 'homologues'. Homologues can be either within that same organism (paralogues), (...) or among different species (orthologues). The importance in finding homologous genes within organisms or across species is that these similarities indicate the possibility of ascribing functions, mechanisms or structures which are required by a variety of species which present the same homology. The interest in structures and functions of genes and proteins common to multiple species is one of the main foci of comparative genomics. Because of this, research into the conservation of genes has been the basis of comparison with regards to homologous genes among diverse organisms. Different causal processes are involved in genetic pathways and mechanisms. Explanations of these depend upon which pathway, structure or mechanism is picked out. Each process has a different causal network to which different explanations refer. What comparative genomics explains are the different causal mechanisms which occur in processes such as differentiation, protein synthesis, and gene regulation. How these processes interact within the organism can only be understood when compared with organisms which possess homologous genes, gene sequences, similar developmental mechanisms, or those whose mechanisms for gene regulation are similar. Explanations which result from comparative genomics contribute to a more comprehensive understanding of both the complex structures and the diverse functions within the genomes of different organisms. There are two related problems which have plagued attempts to define the concept of homology. The first problem arises in clarifying what kind of similarity is involved in a homological comparison. A second problem occurs if more than one concept of homology is needed to pick out the kinds of similarity in different contexts of homological comparison. Homology is usually understood as picking out what counts as 'the same' between two or more organisms. Many of the attempts which have been made to define the concept of homology focus on which criteria are used to restrict the kinds of similarity which exist between two or more organisms or parts being compared. These are criteria which can be used reliably to infer shared ancestry. However, there have been many different attempts to define similarity which have produced a profusion of homology concepts. This profusion has led both to the conflation of what counts as 'the same' in different contexts and has also muddled the relations of comparison which various concepts use to identify homologues. (shrink)

The correct positioning of organs during embryonic development requires multiple cues. The Xenopus cement gland is a mucus‐secreting epithelium that is a simple model for organogenesis, allowing detailed analysis of this complex process. The cement gland forms at a conserved anterior position, where embryonic ectoderm and endoderm touch. In all deuterostomes, this region will form the stomodeum (primitive mouth) and, in some aquatic larva, will also form a cement gland. In recent years, a model has been put forward suggesting (...) that an intermediate level of BMP signaling in the ectoderm leads to cement gland formation. We propose an alternative model whereby, during gastrulation, the cement gland (CG) is positioned by the overlap of three domains, corresponding to anterodorsal identity (AD), ventrolateral identity (VL), and ectodermal outer layer identity (EO), defining the equation (AD + VL + EO = CG). Anterodorsal identity requires a contribution by the transcription factor Otx2 while ventrolateral identity requires the BMP4 signaling pathway. These postional cues are integrated to activate cement gland differentiation. This integration appears to require intermediate steps, including expression of pitx genes, and members of the ATF/CREB and Ets transcription factor families. BioEssays 25:717–726, 2003. © 2003 Wiley Periodicals, Inc. (shrink)

Human neoplasms develop following the progressive accumulation of genetic and epigenetic alterations to oncogenes and tumor suppressor genes. These alterations confer a growth advantage to the cancer cell, leading to its clonal proliferation, invasion into surrounding tissues, and spread to distant organs. Genes that are altered in neoplasia affect three major biologic pathways that normally regulate cell growth and tissue homeostasis: the cell cycle, apoptosis, and differentiation. While each of these pathways can be defined by a unique set of (...) molecular events, they are not biologically separate. Rather, they function more as an integrated molecular network, and perturbations in one pathway can have profound consequences on another. Insights into what distinguishes the regulation of growth and differentiation in a normal cell versus a cancer cell have led to the development of novel anticancer therapies. BioEssays 24:83–90, 2002. © 2002 John Wiley & Sons, Inc. (shrink)

Despite widespread and worldwide efforts to eradicate vector-borne diseases such as malaria, these diseases continue to have an enormous negative impact on public health. For this reason, scientists are working on novel control strategies, such as gene drive technologies (GDTs). As GDT research advances, researchers are contemplating the potential next step of conducting field trials. An important point of discussion regarding these field trials relates to who should be informed, consulted, and involved in decision-making about their design and launch. (...) It is generally argued that community members have a particularly strong claim to be engaged, and yet, disagreement and lack of clarity exist about how this “community” should be defined and delineated. In this paper, we shed light on this “boundary problem”: the problem of determining how boundaries of inclusion and exclusion in (GDT) community engagement should be drawn. As our analysis demonstrates, the process of defining and delineating a community is itself normative. First, we explicate why it is important to define and delineate the community. Second, we demonstrate that different definitions of community are used and intermingled in the debate on GDTs, and argue in favor of distinguishing geographical, affected, cultural, and political communities. Finally, we propose initial guidance for deciding who should (not) be engaged in decision-making about GDT field trials, by arguing that the definition and delineation of the community should depend on the rationale for engagement and that the characteristics of the community itself can guide the effective design of community engagement strategies. (shrink)

This article challenges the view of disability presented by Harris in his article, “Is gene therapy a form of eugenics?”1 It is argued that his definition of disability rests on an individual model of disability, where disability is regarded as a product of biological determinism or “personal tragedy” in the individual. Within disability theory this view is often called “the medical model” and it has been criticised for not being able to deal with the term “disability”, but only (...) with impairment. The individual model of disability presupposes a necessary causal link between a certain condition in the individual and disablement. The shortcomings of such a view of disability are stated and it is argued that in order to have an adequate ethical discourse on gene therapy perspectives from disability research need to be taken into consideration. (shrink)

Prior research has shown that human trafficking has multiple facets and is deeply enmeshed in societies around the world. Two central challenges for anti-trafficking organizations pertain to confronting systemic injustices and establishing caring organizations for survivors to start the process of healing and restoration. Analyzing the work of an anti-trafficking organization, International Sanctuary in Mumbai, we seek to elucidate how a space for caring for trafficking survivors is constructed in a largely non-egalitarian and unjust context. We contribute (...) to discussions on how caring infrastructures are possibly developed so that they do not write off existing gendered and in-egalitarian social structures and how they shape individual biographies. We also highlight how the specific, situated context—defined by those very structures—shapes and influences the transformative potential of care interventions. (shrink)

I argue that Grafen’s formal darwinism project could profitably incorporate a gene’s-eye view, as informed by the major transitions framework. In this, instead of the individual being assumed to maximise its inclusive fitness, genes are assumed to maximise their inclusive fitness. Maximisation of fitness at the individual level is not a straightforward concept because the major transitions framework shows that there are several kinds of biological individual. In addition, individuals have a definable fitness, exhibit individual-level adaptations and arise in (...) a major transition, only to the extent that the inclusive-fitness interests of genes within them coincide. Therefore, as others have suggested, the fundamental level at which fitness is maximised is the gene level. Previous reconciliations of the concepts of gene-level fitness and individual-level fitness implicitly recognise this point. Adaptations always maximise the fitness of their causative genes, but may be simple or complex. Simple adaptations may be controlled by single genes and be maladaptive at higher levels, whereas complex adaptations are controlled by multiple genes and rely on those genes having coinciding fitness interests at a higher level, for a given trait. (shrink)

Aldehyde dehydrogenase 2 (ALDH2) deficiency constitutes one of the most common hereditary enzyme deficiencies, affecting 35% to 40% of East Asians and 8% of the world population. It causes the well-known Asian Alcohol Flush Syndrome, characterized by facial flushing, palpitation, tachycardia, nausea, and other unpleasant feelings when alcohol is consumed. It is also associated with a marked increase in the risk of a variety of serious disorders, including esophageal cancer and osteoporosis. Our recent studies with murine models have demonstrated that (...) a one-time administration of an adeno-associated virus (AAV) gene transfer vector expressing the human ALDH2 coding sequence (AAVrh.10hALDH2) will correct the deficiency state and prevent alcohol-induced abnormalities of the esophagus and bone. If successful in humans, such strategy would reduce the increased risk-associated disorders such as esophageal cancer and osteoporosis, but also prevent the Asian Alcohol Flush Syndrome. This treatment thus raises ethical concerns: although it would potentially prevent fatal disease, it could also allow affected individuals to drink alcohol without suffering the Asian Alcohol Flush Syndrome and, hence, potentially enable personal destructive behavior. Here we explore the ethical arguments against the development of a gene therapy for ALDH2 deficiency and we find them wanting. We contend that development of such treatments is ethically appropriate and should be part and parcel of the solutions offered against the condition. (shrink)

Gene therapy and gene editing are revolutionising the treatment of genetic diseases, most notably haematological disorders. This paper evaluates the use of both techniques in hereditary blood disorders. Many studies have been conducted in this field, especially with gene therapy, with very promising results in diseases such as haemophilia, certain haemoglobinopathies and Fanconi anaemia. The application of these techniques in clinical practice and the foreseeable development of these approaches in the coming years suggest that it (...) might be useful to evaluate the results achieved thus far. It is also essential to reflect on the possible bioethical concerns raised by the use of both techniques, especially in terms of safety issues for patients, potential side effects, treatment duration, accessibility and cost of treatment, and the heritability of genetic changes produced if germline cells are used. (shrink)

Advancing the reductionist conviction that biology must be in agreement with the assumptions of reductive physicalism (the upward hierarchy of causal powers, the upward fixing of facts concerning biological levels) A. Rosenberg argues that downward causation is ontologically incoherent and that it comes into play only when we are ignorant of the details of biological phenomena. Moreover, in his view, a careful look at relevant details of biological explanations will reveal the basic molecular level that characterizes biological systems, defined (...) by wholly physical properties, e.g., geometrical structures of molecular aggregates (cells). In response, we argue that contrary to his expectations one cannot infer reductionist assumptions even from detailed biological explanations that invoke the molecular level, as interlevel causal reciprocity is essential to these explanations. Recent very detailed explanations that concern the structure and function of chromatin—the intricacies of supposedly basic molecular level—demonstrate this. They show that what seem to be basic physical parameters extend into a more general biological context, thus rendering elusive the concepts of the basic level and causal hierarchy postulated by the reductionists. In fact, relevant phenomena are defined across levels by entangled, extended parameters. Nor can the biological context be explained away by basic physical parameters defining molecular level shaped by evolution as a physical process. Reductionists claim otherwise only because they overlook the evolutionary significance of initial conditions best defined in terms of extended biological parameters. Perhaps the reductionist assumptions (as well as assumptions that postulate any particular levels as causally fundamental) cannot be inferred from biological explanations because biology aims at manipulating organisms rather than producing explanations that meet the coherence requirements of general ontological models. Or possibly the assumptions of an ontology not based on the concept of causal powers stratified across levels can be inferred from biological explanations. The incoherence of downward causation is inevitable, given reductionist assumptions, but an ontological alternative might avoid this. We outline desiderata for the treatment of levels and properties that realize interlevel causation in such an ontology. (shrink)

Abstract Gene-selectionists define fundamental terms in non-standard ways. Genes are determinants of difference. Phenotypes are defined as a gene’s effects relative to some alternative whereas the environment is defined as all parts of the world that are shared by the alternatives being compared. Environments choose among phenotypes and thereby choose among genes. By this process, successful gene sequences become stores of information about what works in the environment. The strategic gene is defined as (...) a set of gene tokens that combines ‘actor’ tokens responsible for an effect with ‘recipient’ tokens whose replication is thereby enhanced. This set of tokens can extend across the boundaries of individual organisms, or other levels of selection, as these are traditionally defined. Content Type Journal Article Pages 1-19 DOI 10.1007/s10539-012-9315-5 Authors David Haig, Department of Organismic and Evolutionary Biology, Harvard University, 26 Oxford Street, Cambridge, MA 02138, USA Journal Biology and Philosophy Online ISSN 1572-8404 Print ISSN 0169-3867. (shrink)

Written for non-experts, this volume introduces the mechanisms that underlie reticulate evolution. Chapters are either accompanied with glossaries that explain new terminology or timelines that position pioneering scholars and their major discoveries in their historical contexts. The contributing authors outline the history and original context of discovery of symbiosis, symbiogenesis, lateral gene transfer, hybridization or divergence with gene flow, and infectious heredity. By applying key insights from the areas of molecular (phylo)genetics, microbiology, virology, ecology, systematics, immunology, epidemiology and (...) computational science, they demonstrate how reticulate evolution impacts successful survival, fitness and speciation. Reticulate evolution brings forth a challenge to the standard Neo-Darwinian framework, which defines life as the outcome of bifurcation and ramification patterns brought forth by the vertical mechanism of natural selection. Reticulate evolution puts forward a pattern in the tree of life that is characterized by horizontal mergings and lineage crossings induced by symbiosis, symbiogenesis, lateral gene transfer, hybridization or divergence with gene flow, and infective heredity, making the “tree of life” look more like a “web of life.” On an epistemological level, the various means by which hereditary material can be transferred horizontally challenges our classic notions of units and levels of evolution, fitness, modes of transmission, linearity, communities, and biological individuality. The case studies presented examine topics including the origin of the eukaryotic cell and its organelles through symbiogenesis; the origin of algae through primary and secondary symbiosis and dinoflagellates through tertiary symbiosis; the superorganism and holobiont as units of evolution; how endosymbiosis induces speciation in multicellular life forms; transferrable and non-transferrable plasmids and how they symbiotically interact with their host; the means by which pro- and eukaryotic organisms transfer genes laterally (bacterial transformation, transduction and conjugation as well as transposons and other mobile genetic elements); hybridization and divergence with gene flow in sexually-reproducing individuals; current (human) microbiome and viriome studies that impact our knowledge concerning the evolution of organismal health and acquired immunity; and how symbiosis and symbiogenesis can be modelled in computational evolution. (shrink)

Although the knowledge about biological systems has advanced exponentially in recent decades, it is surprising to realize that the very definition of Life keeps presenting theoretical challenges. Even if several lines of reasoning seek to identify the essence of life phenomenon, most of these thoughts contain fundamental problem in their basic conceptual structure. Most concepts fail to identify either necessary or sufficient features to define life. Here, we analyzed the main conceptual frameworks regarding theoretical aspects that have been supporting the (...) most accepted concepts of life, such as (i) the physical, (ii) the cellular and (iii) the molecular approaches. Based on an ontological analysis, we propose that Life should not be positioned under the ontological category of Matter. Yet, life should be better understood under the top-level ontology of “Process”. Exercising an epistemological approach, we propose that the essential characteristic that pervades each and every living being is the presence of organic codes. Therefore, we explore theories in biosemiotics and code biology in order to propose a clear concept of life as a macrocode composed by multiple inter-related coding layers. This way, as life is a sort of metaphysical process of encoding, the living beings became the molecular materialization of that process. From the proposed concept, we show that the evolutionary process is a fundamental characteristic for life’s maintenance but it is not necessary to define life, as many organisms are clearly alive but they do not participate in the evolutionary process (such as infertile hybrids). The current proposition opens a fertile field of debate in astrobiology, epistemology, biosemiotics, code biology and robotics. (shrink)

The article combines a criticism of public understanding of science with the sociology of expectations to examine how particular expectations toward scientific progress have performative effects for the construction of publics as citizens of science. By analyzing a particular controversy about gene therapy in Denmark, the article demonstrates how different sets of expectations can be used to discriminate among three different assemblages: the assemblage of consumption, the assemblage of comportment, and the assemblage of heroic action. Each of these (...) assemblages makes medical science, scientific citizenship, politics, patients, doctors, and expectations toward the future emerge in particular ways. By their radically different expectations toward science and their different constructions of what it means to be a scientific citizen, the assemblages construct the objectives of the governance of science in three very different ways. (shrink)

The classification of techniques used in mitochondrial donation, including their role as purported germ-line gene therapies, is far from clear. These techniques exhibit characteristics typical of a variety of classifications that have been used in both scientific and bioethics scholarship. This raises two connected questions, which we address in this paper: how should we classify mitochondrial donation techniques?; and what ethical implications surround such a classification? First, we outline how methods of genetic intervention, such as germ-line gene (...) class='Hi'>therapy, are typically defined or classified. We then consider whether techniques of mitochondrial donation fit into these, whether they might do so with some refinement of these categories, or whether they require some other approach to classification. To answer the second question, we discuss the relationship between classification and several key ethical issues arising from mitochondrial donation. We conclude that the properties characteristic of mitochondrial inheritance mean that most mitochondrial donation techniques belong to a new sub-class of genetic modification, which we call ‘conditionally inheritable genomic modification’. (shrink)

Barbieri introduced and developed the concept of organic codes. The most basic of them is the genetic code, a set of correspondence rules between otherwise unrelated sequences: strings of nucleotides on the one hand, polypeptidic chains on the other hand. Barbieri noticed that it implies ‘coding by convention’ as arbitrary as the semantic relations a language establishes between words and outer objects. Moreover, the major transitions in life evolution originated in new organic codes similarly involving conventional rules. Independently, dealing with (...) heredity as communication over time and relying on information theory, we asserted that the conservation of genomes over the ages demands that error-correcting codes make them resilient to casual errors. Moreover, the better conservation of very old parts of the genome demands that they result from combining successively established nested codes such that the older an information, the more numerous component codes protect it. Barbieri’s concept of organic code and that of genomic error-correcting code may seem unrelated. We show however that organic codes actually entail error-correcting properties. Error-correcting, in general, results from constraints being imposed on a set of sequences. Mathematical equalities are conveniently used in communication engineering for expressing constraints but error correction only needs that constraints exist. Biological sequences are similarly endowed with error-correcting ability by physical-chemical or linguistic constraints, thus defining ‘soft codes’. These constraints are moreover presumably efficient for correcting errors. Insofar as biological sequences are subjected to constraints, organic codes necessarily involve soft codes, and their successive onset results in the nested structure we hypothesized. Organic codes are generated and maintained by means of molecular ‘semantic feedback loops’. Each of these loops involves genes which code for proteins, the enzymatic action of which controls a function needed for the protein assembly. Taken together, thus, they control the assembly of their own structure as instructed by the genome and, once closed, these loops ensure their own conservation. However, the semantic feedback loops do not prevent the genome lengthening. It increases both the redundancy of the genome and the information quantity it bears, thus improving the genome reliability and the specificity of the enzymes, which enables further evolution. (shrink)

It may be unethical to deny children with cystic fibrosis access to ethically approved clinical trials from which they might benefitDespite advances in nutritional management, aggressive antibiotic usage, and physiotherapy, cystic fibrosis remains a life limiting illness with high morbidity that imposes considerable burdens on children and families.1 Although survival to 40 years is predicted for children born in 1990s, the median age of death in 2003 was 24.2 years .The pathophysiological features of CF are produced by a defective (...) class='Hi'>gene on chromosome 7, resulting in the defective production of a protein that regulates cellular ion transport. Defective ion transport is thought to lead to increased mucus viscosity , with poor airway clearance, recurrent bacterial infection, lung damage, and death.Gene therapy , the insertion of a normally functioning gene into deficient host cells using a suitable vector, is a potential treatment or cure for diseases produced by single gene defects—for example, CF. Gene therapy does, however, have potential or actual risks, leading many to suggest that evidence of efficacy in adults should be demonstrated before trials are conducted in children. Many serious diseases in adults such as CF have their onset in childhood. If early treatment provides greater hopes of benefit, children may be more appropriate targets for GT in CF than adults. It may be unethical to deny them access to properly constructed, ethically approved clinical trials from which they might benefit.Since research in children should be scientifically valid, in the child’s best interests, and the subject of valid consent, this article will consider these parameters in relation to trials of GT in children with CF. Because of the importance of consumer participation in the design of research we present the results of a questionnaire about GT trials delivered …. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Human Gene TherapyMary Carrington Coutts (bio)On September 14, 1990, researchers at the U.S. National Institutes of Health (NIH) performed the first approved gene therapy procedure on a four-year-old girl named Ashanti DeSilva. Born with a rare genetic disease, severe combined immune deficiency (SCID), Ashanti lacked a healthy immune system and was extremely vulnerable to infection. Children with SCID usually develop overwhelming infections and rarely survive to (...) adulthood; even a common childhood illness like chicken pox is life-threatening. Ashanti led a cloistered existence, avoiding contact with people outside her family, remaining in the sterile environment of her home, and battling frequent illnesses with massive amounts of antibiotics.In Ashanti's gene therapy procedure, her own white blood cells were genetically modified and then infused back into her bloodstream. Laboratory tests show that the therapy has strengthened Ashanti's immune system. She no longer has recurrent colds, has been allowed to attend school, and has been immunized against whooping cough. This gene therapy procedure is not a cure, however. The genetically-treated white blood cells only survive for a few months and must then be replaced, but Ashanti's future is much brighter because of the new therapy (VI, Thompson [The First] 1993).Although this simplified description of Ashanti's gene therapy procedure sounds like a happy ending, it is little more than an optimistic chapter in a long story. The road to the first approved gene therapy procedure was rocky and fraught with controversy. The biology of human gene therapy is very complex, and there are still many techniques that need to be developed and diseases that need to be understood more fully before gene therapy is well established. The public policy debate surrounding the possible use of genetically engineered material in human subjects is equally complex. Major participants in the debate come from the fields of biology, government, law, medicine, philosophy, politics, and religion, each bringing different views to the discussion.In studying the ethics of gene therapy, one should draw a distinction between [End Page 63] therapy on somatic (non-reproductive) cells and germ (reproductive) cells. Only the germ cells carry the genes that will be passed on to the next generation. Reactions to gene therapy have varied widely. Some commentators on gene therapy object to any form of genetic manipulation, no matter how well-intentioned (VI, Rifkin 1983). Another reaction is to allow the use of somatic-cell therapy, but not to approve the use of germ-line therapy, which could have unforeseeable effects on future generations. A different stance is that, with proper regulation and safeguards, germ-line gene therapy is a logical extension of the progress made to date and that it is an ethically acceptable procedure.TechniquesTo date, 43 research protocols have been approved for somatic-cell gene therapy in the United States. The techniques employed in each protocol vary, but in general a virus is used as a "vector" to insert the desired gene into the DNA of the patient's cells, in order to compensate for a defective gene. For Ashanti's gene therapy, this technique involved obtaining white blood cells and introducing properly functioning genes into as many of the cells as possible. The normal genes were delivered through the use of a specially-engineered virus.Although similar techniques are used in germ-line gene therapy, the procedure is more difficult. There are two basic ways to perform germ-line gene therapy: (1) to treat a preimplantation embryo that carries a serious genetic defect before its implantation in the mother, which necessitates the use of in vitro fertilization techniques; or (2) to treat the germ cells (sperm or egg cells) of afflicted adults so that the genetic defects would not be passed on to their offspring, which requires the technical expertise to delete the defective gene and insert a properly functioning replacement. Because of the complexity of the procedures involved and the attendant ethical controversy, germ-line therapy is not currently performed.Candidate Diseases for Gene TherapyAt present, gene therapy is likely to be most successful in treating diseases that are caused by single-gene defects and has been approved for treating diseases such... (shrink)

The analysis distinguishes two types of standards for defining organic produce; process standards and product standards. Process standards define organic products by the method and means of production. Product standards define organic by the physical quality of the end product. The National Organic Program (NOP) uses process standards as the basis for defining organic. However, the situation is complicated by agricultural production practices, which sometimes result in the migration of NOP prohibited substances from conventional to organic fields. When this interaction (...) alters the value of the product or the costs of production, a production externality is said to exist. Defining organic using process, rather than product standards, influences the burden and character of production externalities. The NOP’s emphasis on process standards reduces the likelihood that production externalities will emerge. (shrink)

Difficulties with the typological concept of species led biologists to reject the "typological" presupposition of an archetype which is manifest in each member of a species. The resulting concept of species, which is here called the phenotypic species concept, is considered as implying that biological species are not real. Modern population thinking has given rise to the concept of a species as a gene-pool. This modern concept is contrasted here with the phenotypic concept in light of some general criteria (...) for evaluating species concepts and is shown to be more satisfactory. Finally, it is held that to ask if a species is real is to ask whether the species grouping arrived at by applying the principles involved in the species concept corresponds with groups of organisms amongst which important biological relationships exist. It is argued that in this sense species, as defined by the gene-pool concept, are certainly real. (shrink)

Pax genes are a family of development control genes that encode nuclear transcription factors. They are characterized by the presence of the paired domain, a conserved amino acid motif with DNA‐binding activity. Originally, paired‐box‐containing genes were detected in Drosophila malenogaster, where they exert multiple functions during embryogenesis. In vertebrates, Pax genes are also involved in embryogenesis. Mutations in four out of nine characterized Pax genes have been associated with either congenital human diseases such as Waardenburg syndrome (PAX3), Aniridia (PAX6), (...) Peter's anomaly (PAX6), renal coloboma syndrome (PAX2), Small eye (Pax6), (Pax21Neu), which all show defects in development. Recently, analysis of spontaneous and transgenic mouse mutants has revealed that vertebrate Pax genes are key regulators during organogenesis of kidney, eye, ear, nose, limb muscles, vertebral column and brain. Like their Drosophila counterparts, vertebrate Pax genes are involved in pattern formation during embryogenesis, possibly by determiing the time and place of organ initiation of morphogenesis. For most tissues, however, the nature of the primary development action of Pax transcription factors remains to be elucidated. One predominant theme is signal transduction during tissue interactions, which may lead to a position‐specific regulation of cell proliferation. (shrink)

The purpose of this preliminary qualitative research study is to explore the role and function of multiple dynamic interactive aesthetic and intersubjective phenomena in the creative arts therapies process relative to transformation in perception, behavior, relationship, and well-being. A group of doctoral students and faculty studied these phenomena in an analogous creative arts therapies laboratory context using a method called Intrinsic Arts-Based Research. Intrinsic Arts-Based Research is a systematic study of psychological, emotional, relational, and arts-based phenomena, parallel to those (...) emergent in the creative arts therapies, using individual and collective intrinsic immersive and reflective experience in combination with qualitative and arts-based research methods. Our primary goal was to simulate the creative arts therapies experience in order to identify, document, and describe the complex transformative phenomena that occur at the nexus of arts-based expression, reflection, and relationships in the arts therapies. For the purposes of this paper transformation is defined as “.... a significant reconfiguration of perception and thought resulting in the lessening of psychic restraint and pain, allowing for the emergence of new psychological perspectives that contribute to living a more creative life” (Gerber et al. 2012, 45). Through a deductive thematic analysis of written accounts of these simulated creative arts therapies experiences by participant/researchers in the laboratory we identified three primary dynamic and interactive broad constructs that together, with more specific modifying themes, might account for and describe change within the creative arts therapies. These broad dynamic interactive themes are: ruptures, resolutions, and transformation; relationship and intersubjectivity; and, arts-based expressive processes. The more specific modifying themes include dialectical rupture and resolution, relational attunements and ruptures, imaginational flow, transcendence and ruptures, sensory/kinesthetic/embodied ways of knowing, and intersubjective transcendence. We propose that change in the creative arts therapies is driven more by a dynamic system of interactive phenomena the varying combinations of which create conditions for relational attunement, imagination, dialectical tensions and creative resolutions, and the ultimately creative transformation. (shrink)

The American Psychological Association's (APA's) as well as other professional organizations' (e.g., American Psychiatric Association) removal of homosexuality as a mental disorder represented a paradigmatic shift in thinking about exual orientation. Since then, APA (2000) disseminated guidelines for working with lesbian, gay, and bisexual (LGB) clients, and a variety of scholars and researchers alike have advocated affirmative therapeutic interventions with LGB individuals. Despite these efforts, the controversy over treating individuals with LGB orientations using nonaffirmative techniques continues. In this discussion, (...) the limited evidence regarding the efficacy and effects of conversion therapy is surveyed, particularly in the context of empirically supported treatment criteria summarized by Division 12 (clinical psychology) of the APA. Authors then consider the resulting ethical considerations in performing conversion therapy and propose alternative uses of affirmative therapy on the basis of ethical standards defined by APA. Finally, options for treating LGB individuals who are coming to terms with their sexual orientations are discussed. (shrink)

In March 1996, the General Accounting Office (GAO) issued the reportScientific Research: Continued Vigilance Critical to Protecting Human Subjects.It stated that “an inherent conflict of interest exists when physician-researchers include their patients in research protocols. If the physicians do not clearly distinguish between research and treatment in their attempt to inform subjects, the possible benefits of a study can be overemphasized and the risks minimized.” The report also acknowledged that “the line between research and treatment is not always cleartoclinicians. Controversy (...) exists regarding whether certain medical procedures should be categorized as research.”This problem currently plagues gene transfer research. A few months prior to the GAO report, an ad hoc committee appointed by National Institutes of Health (NIH) Director Harold Varmus expressed similar concerns in its assessment of NIH investment in research on gene therapy. (shrink)

This paper investigated the part played by collaborative practices in chaneling the work of prominent biochemists into the development of molecular biology. The RNA collaborative network that emerged in the 1960s in France encompassed a continuum of activities that linked laboratories to policy-making centers. New institutional frameworks such as the DGRST committees were instrumental in establishing new patterns of funding, and in offering arenas for multidisciplinary debates and boundary assessment. It should be stressed however, that although this collaborative network was (...) based on centralized initiatives aimed at developing molecular biology as a new biological specialty, it operated above all as a nexus of practices. The main argument of this paper is that the central allocation of funds and resources, exemplified by the DGRST operation, actually enhanced the creation of a self-conscious community of biochemists turned molecular biologists by virtue of an increased circulation of tools, skills, and results that took place within the RNA network and a few analogous systems of exchange.Having hands on “things” viewed as identical for all practical purposes was a potent factor in changing the experimental systems and their meanings. Limited but shared means of doing helped to reduce uncertainties, change representations, and turn contingent decisions into meaningful choices. The collaborative enterprises then resulted in personal contacts and the transfer of skills and materials, which gradually incorporated the biochemical tools into systems producing facts relevant to molecular biology as defined by its early practitioners. In that sense, networking was a regulatory process that stabilized new research objects and acculturated French biochemists.The mere existence of such a collaborative network also changed the scale of the disciplining process. Collaborations may have been started for contingent motives, but multiple exchanges resulted in the emergence of a new collective, and amplified small displacements. Collaborations, however, worked both ways, and the RNA network may be viewed as an efficient “trading-post.” An unexpected outcome of the development of a conversion zone is the fact that, by the late 1960s, the former biochemists dominated the “new” world of molecular biology — both in terms of research habits, since interests in structural studies dominated the field, and in terms of institutional initiatives such as the creation of laboratories and institutes for molecular biology.As an example of the cognitive displacements achieved by the network, I have focused here on the stabilization of “messenger RNA” as a new biological entity. This process illustrates the role of “boundary objects” and other mediating innovations in the development of disciplinary structures. Students of science trained in the symbolic interactionism tradition have proposed that “boundary objects” enhance the multiple interactions between heterogeneous social worlds: they are robust enough to enhance unity, but plastic enough to be manipulated in different social and cultural contexts.81 Within the emerging network, messenger RNA was a weakly structured “genetic information carrier” in common use, but it could, at the same time, be a strongly structured “macromolecular structure” adapted to practical and local uses. Consequently, messenger RNA favored the association of groups of heterogeneous scientists with backgrounds and interests in medical biochemistry, genetics, physical chemistry, organic chemistry, and so forth. This contrast between general and local uses was also instrumental in integrating the manipulation of things and the negotiation of aims. In contrast to transfer RNAs, which in the French context remained objects for chemical (and mainly structural) studies, messenger RNA became a key component of the new culture of “genetic information”. Messenger RNA was a loose theoretical entity described as a “genetic information carrier” in the policy-making documents, while operational but tacit and more conflicting definitions prevailed at the bench. In other words, messenger RNA was not only a classical “boundary object” but also a “flag object,” which tightened the collaborative network by mediating between the DGRST offices and the laboratories. (shrink)

In March 1996, the General Accounting Office issued the report Scientific Research: Continued Vigilance Critical to Protecting Human Subjects. It stated that “an inherent conflict of interest exists when physician-researchers include their patients in research protocols. If the physicians do not clearly distinguish between research and treatment in their attempt to inform subjects, the possible benefits of a study can be overemphasized and the risks minimized.” The report also acknowledged that “the line between research and treatment is not always clear (...) to clinicians. Controversy exists regarding whether certain medical procedures should be categorized as research.”This problem currently plagues gene transfer research. A few months prior to the GAO report, an ad hoc committee appointed by National Institutes of Health Director Harold Varmus expressed similar concerns in its assessment of NIH investment in research on gene therapy. (shrink)

In this paper, we discuss the perspective of intra-organismal ecology by investigating a family of ecological models. We consider two types of models. First order models describe the population dynamics as being directly affected by ecological factors (here understood as nutrients, space, etc). They might be thought of as analogous to Aristotelian physics. Second order models describe the population dynamics as being indirectly affected, the ecological factors now affecting the derivative of the growth rate (that is, the population acceleration), possibly (...) through an impact on non-genetically inherited factors. Second order models might be thought of as analogous to Galilean physics. In the joint paper, we apply these ideas to a situation of gene therapy. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Human Rights and the Ethics of Globalization by Daniel E. Lee and Elizabeth J. LeeGuenther "Gene" HaasHuman Rights and the Ethics of Globalization Daniel E. Lee and Elizabeth J. Lee Cambridge: Cambridge University Press, 2010. 264 pp. $27.99While there have been numerous books written on the nature of rights in a world of globalization, this book fills a gap by presenting a thoughtful and balanced discussion that (...) is firmly grounded in ethical theory yet takes into account the concerns of both nongovernmental organizations (NGOs) and the realities of the business world. The authors acknowledge that there can be naive troublemakers in NGOs and greedy people in business as well as socially concerned people in both groups.The book is divided into three parts. Part 1 deals with the philosophical foundations for addressing ethical issues in business within the context of globalization. Here the authors advocate for a limited, carefully defined notion of rights, properly noting that not everything of ethical significance falls under the notion of rights. The important distinction they make is between negative rights (the rights to life and freedom), which oblige us never to harm others, and positive rights (rights of entitlement, such as education, medical care, housing), which depend upon the various types of relationships, voluntary or involuntary, in which people find themselves. The former apply universally to neighbors near and far; the latter, because they are defined by relationships, apply primarily to neighbors near to us. With globalization distant neighbors often become near neighbors—for example, when a company builds a production facility in another country. In view of this, the authors argue that the Enlightenment’s individualistic understanding of rights is incomplete. A fuller version of rights (rooted in Aristotle) situates all humans in social communities where mutual charitable treatment is better suited to promoting human flourishing. With this in mind, the authors use the second form of Kant’s categorical imperative (“Always treat others as ends”) to map out some helpful practical guidelines for multinational corporations that are conducive to human well-being. Such guidelines seek to take into consideration all the constituencies that these organizations are called to serve—including shareholders, customers, employees, suppliers, and communities of location.In part 2 the authors draw on these philosophical foundations and practical guidelines to discuss ethical issues related to business practices in four different [End Page 198] countries: respect for human rights in China given the widespread practice of outsourcing; the condition of workers in Liberia where Firestone is the largest employer; free trade and fair trade issues related to coffee growers in Ethiopia; and the question of whether low-wage factories (maquiladoras) in Mexico exploit workers or provide economic opportunity for them. The authors provide a fair evaluation of each situation rooting their discussion in the nature of each respective business and the conditions over which it has direct control.Part 3 deals with the possibilities and challenges of dealing with multinational corporations that do not respect human rights. Although many argue for sanctions and treaty provisions, the authors argue that these approaches have their limitations. As an alternative, they recommend the Alien Tort Claims Act as the most promising means of enforcing human rights standards among American multinational corporations with overseas operations.This is an insightful and balanced book on human rights and social ethics precisely because it has a positive view of markets and is optimistic about achieving greater social responsibility in the business world. It will be helpful to all committed to promoting ethical business practices in a growing global economy—not only in the church and academy but also in the legal community and business world and in NGOs.Guenther HaasRedeemer University CollegeCopyright © 2013 Society of Christian Ethics... (shrink)

This paper attempts to debunk the slippery-slope argument against human germ-line gene therapy by showing that the downside of the slope – genetic enhancement – need not be as unethical or unjust as some people have supposed. It argues that if genetic enhancement is governed by proper regulations and is accompanied by adequate education, then it need not violate recognized principles of morality or social justice. Keywords: germ-line therapy, slippery slope argument, future generations, social justice CiteULike Connotea (...) Del.icio.us What's this? (shrink)

Genomes are defined by their primary sequence. The functional properties of genomes, however, are determined by far more complex mechanisms and depend on multiple layers of regulatory control processes. A key emerging contributor to genome function is the architectural organization of the cell nucleus. The spatial and temporal behavior of genomes and their regulatory proteins are now being recognized as important, yet still poorly understood, control mechanisms in genome function. Combined cell biological, molecular and computational analysis of architectural (...) aspects of genome function has added a further dimension to the investigation of some of the most fundamental cellular processes including transcription and maintenance of genome integrity. The complete elucidation of the contribution that nuclear architecture makes to gene expression will be required to fully understand physiological processes such as differentiation, development and disease at the cellular level. Here I give an overview of some of the emerging concepts in the study of in vivo genome organization and function. BioEssays 27:477–487, 2005. Published 2005 Wiley Periodicals, Inc. (shrink)

Certamente, desde que o ser humano existe, a vida nunca esteve isenta de manipulação técnica. Todavia, formas recentes de biotecnologia vão mais longe, tendendo a tornar indiscernível as distinções clássicas entre crescimento natural e produção artificial. Ars sive natura, este poderia ser o novo slogan. Neste sentido, em oposição à bioética corrente que tenta compensar o monismo tecnológico através de um dualismo prático, discutiremos a idéia de que, quando age sobre o Outro (Fremdeneinwirkung), a biotecnologia nunca é puramente técnica, sendo (...) imediatamente prática, ética e política. Por outro lado, confrontada com novos desafios tecnológicos, a fenomenologia necessita assumir certas características de fenomenotecnologia; ações não são nunca meramente práticas. Uma tal combinação entre fenomenologia e fenomenotecnologia abre especiais perspectivas no que diz respeito ao trato da questão da vida humana. Primeiramente, descreveremos o eu corporal como gerador de sua própria história, na medida que evidencia graus de identidade e se constitui como altamente vulnerável. Em segundo lugar, distinguiremos entre a atitude técnica, restrita ao fato de que algo se modifica, e a atitude terapêutica, que se dirige a alguém que sofre: o paciente. A seguir, ultrapassaremos os limites do enquadramento clínico ao considerar novas conquistas no que diz respeito à produção da vida (por exemplo, clonagem e manipulação genética). Antes de simplesmente argumentar pró ou contra, temos de indagar o que significa produzir um eu vivo. Neste contexto, o tempo da poiesis será contrastado com o do pathos. Examinaremos o lugar desde o qual um ser vivo ou pessoal pode ser definido como alguém em si, e pretendemos tencionar simultaneamente o caráter paradoxal de atribuição de um eu ao Outro (Fremdezuschreibung), que assemelha-se ao paradoxo de ter a experiência do Outro como Outro (Fremderfahrung). Pois a pré-história e a pós-história de um alguém específico, incluindo nascimento e morte, é apenas acessível a nós em termos de substituição. Reduzidos a conjuntos de células, seres humanos seriam liberados de tudo isto. Restaria algo sobre o que falamos, mas de modo algum alguém falando a nós. PALAVRAS-CHAVE – Biotecnologia. Terapia. Fenomenologia. Fenomenotecnologia. ABSTRACT Certainly, as long as human beings exist, life has never been exempt from technical manipulations. However, recent forms of biotechnology go further, tending to blur the classical distinction between natural growth and artificial production. Ars sive natura, that may be the new slogan. Now, in opposition to current bioethics which try to compensate the technological monism by means of a practical dualism, we will argue that by acting upon the Other (Fremdeinwirkung) biotechnology is never purely technical, it is immediately practical, ethical and political. On the other side, faced with new technological challenges, phenomenology needs certain features of phenomenotechnology; actions are never merely practical. Such an intertwining of phenomenology and phenomenotechnology opens up special perspectives in dealing with the issue of human life. Firstly, we will describe the bodily self as generating its own history, as showing grades of selfhood and as being highly vulnerable. Secondly, we will distinguish between the technological attitude, restricted on something to be changed, and the therapeutic attitude, addressed to somebody suffering, namely the patient. In the end, we cross the limits of the clinical frame by considering new attempts of life production (e.g. cloning and gene manipulation). Before simply arguing pro and con we have to ask what does it mean to produce a living self. In this context the time of poiesis will be contrasted with the time of pathos. We will examine the place from where a living or personal being may be defined as somebody in itself, and we will simultaneously stress the paradoxical character of ascribing the status of a self to the Other (Fremdzuschreibung), which resembles the paradox of experiencing the Other as an Other (Fremderfahrung). At last, the pre-history and the post-history of a oneself, including birth and death, is only accessible for us by means of substitution. Reduced to cell ensembles, human beings would get rid of all that. There would be left something we speak about, but by no means somebody speaking to us. KEY WORDS – Biotechnology. Therapy. Phenomenology. Phenomenotecnology. (shrink)

The word “gene” means different things to different people, and can even be used in multiple ways by the same individual. In this review, I follow a particular thread running through Griffith and Stotz’s “Genetics and Philosophy: an introduction”, which is the way that methods of investigation influence the way we define the concept of “gene”, from nineteen century breeding experiments to twenty-first century big data bioinformatics. These different views lead to a set of gene concepts, (...) which only partially overlap each other, each of which picks up on a different part of gene behaviour, function or scientific utility. This plurality of concepts carries over to the use of the concept of “information” in biology, where the non-overlapping concepts can be connected to whether you view the genome as a blueprint for development, a response to environmental triggers, an engine of heritability, or a document of history. (shrink)

We describe the foundations and the systematization of natural logic-like monotonic inference using unscoped episodic logical forms (ULFs) that as reported by Kim et al. (Proceedings of the 1st and 2nd Workshops on Natural Logic Meets Machine Learning (NALOMA), Groningen, 2021a, b) introduced and first evaluated. In addition to providing a more detailed explanation of the theory and system, we present results from extending the inference manager to address a few of the limitations that as reported by Kim et al. (...) (Proceedings of the 1st and 2nd Workshops on Natural Logic Meets Machine Learning (NALOMA), Groningen, 2021b) naive system has. Namely, we add mechanisms to incorporate lexical information from the hypothesis (or goal) sentence, enable the inference manager to consider multiple possible scopings for a single sentence, and match against the goal using English rather than the ULF. (shrink)

Biological theory demands a clear organism concept, but at present biologists cannot agree on one. They know that counting particular units, and not counting others, allows them to generate explanatory and predictive descriptions of evolutionary processes. Yet they lack a unified theory telling them which units to count. In this paper, I offer a novel account of biological individuality, which reconciles conflicting definitions of ‘organism’ by interpreting them as describing alternative realisers of a common functional role, and then defines individual (...) organisms as essentially possessing some mechanisms that play this role. (shrink)

This book provides a worthwhile and challenging introduction to scientific and moral issues in germline gene therapy. It contains two parts, dealing with scientific and moral issues respectively. In the first, scientific part, a chapter on what the alternatives to germline therapy are is helpful, especially in pointing out that many of the goals one might want to achieve by using germline therapy may be achieved, at a slighter risk, by using non-genetic technologies such as selective (...) embryo implantation and selective abortion. However, the authors argue that germline therapy may be an option in certain cases in which these alternatives are not viable (page 72). In the second part of the book, moral and political issues in germline therapy are discussed, such as the distinction between therapy and enhancement, potential benefits and harms, rights and responsibilities, justice, our concept of humanness, and public policy issues. The …. (shrink)

The development of gene therapy has always come with the expectation that it will offer a cure for various disorders, of which hemophilia is a paradigm example. However, although the term is used regularly, it is unclear what exactly is meant with “cure”. Therefore, the aim of this paper is to analyse how the concept of cure is used in practice and evaluate which of the interpretations is most suitable in discussions surrounding gene therapy. We analysed (...) how cure is used in four different medical fields where the concept raises discussion. We show that cure can be used in three different ways: cure as normalization of the body, cure as obtaining a normal life, or cure as a change in identity. We argue that since cure is a practical term, its interpretation should be context-specific and the various uses can exist simultaneously, as long as their use is suitable to the function the notion of cure plays in each of the settings. We end by highlighting three different settings in the domain of hemophilia gene therapy in which the term cure is used and explore the function(s) it serves in each setting. We conclude that in the clinical application of gene therapy, it could be better to abandon the term cure, whereas more modest and specified definitions of cure are required in the context of health resource allocation decisions and decisions on research funding. (shrink)

In the early 1970s, the major industrial states were preparing to shift to nuclear fission as their principal source of electrical power. But that change has not occurred. In part, this is due to a growing public recognition that techniques and institutions for management of spent nuclear fuel, separated plutonium, and long-lived radioactive wastes are not yet fully developed. The consequent pressures for resolution have spurred a series of often ill-defined and sometimes contradictory attempts to promote international cooperation and (...) control of hazardous activities. How are these varied suggestions to be compared and evaluated? By what criteria can plans be selected that are likely to be both effective and negotiable? In this study, Gene I. Rochlin, physicist and social scientist, explores the technical, political, and institutional aspects of international nuclear export and fuel cycle policies. He categorizes existing proposals and suggests way to develop new ones that better promote both national and international goals. Dr. Rochlin argues neither for nor against the use of nuclear power or plutonium fuels. Instead, he addresses the question of how international arrangements could be reached that might jointly satisfy the objective of the several key nations, yet not be too difficult to negotiate. He concludes that a major fault has been the tendency to improvise arrangements for specific technical or industrial operations. As a result, overall social and political goals have become the bargaining points for compromise. Yet attempts to simultaneously resolve all problems are unlikely to prove fruitful. Dr. Rochlin suggests instead the formation of institutions organized around more limited social, political, and technical objectives, even at the expense of excluding some nations or omitting some aspects of the nuclear fuel cycle. Only by so doing, he argues, can immediate agreements be reached that preserve the potential for more comprehensive future arrangements without sacrificing industrial, environmental, or nonproliferation goals. This important book will be of interest to scientists, social scientists, government officials, and others concerned with the problems of plutonium management and nuclear wastes. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ethics & the Environment 8.1 (2003) 143-150 [Access article in PDF] Species Nova [To See Anew]Art as Ecology David Haley Looking Back From space, looking back at earth, we may see three key issues: the accelerating increase of the human species, the accelerating decrease of other species, and the accelerating effects of climate change. We might ask, how are we to cope with these changes creatively?That our societies tend (...) to value economics over ecology, and monoculture and agro-industry over diversity and permaculture, is certainly worthy of ethical attention. Here I want to invoke a call for integrating art as a necessary contribution to ecological intervention. I consider how artists may engage uncertainty, and how art may be used to develop new ways of seeing and "drawing." This is art for evolutionary survival, not commodification. Art that practices care, shared responsibility, and diversity in the pursuit of eco-centric cultures. Although this paper mainly references visual art forms, this should not be taken to exclude others. Here I am primarily concerned with identifying some of the possible forms of ecological or eco-art. This is art practiced by artist and inventors in the manner of the archetype of Daedalus and worthy of the name implied by the root of the word art. Rt, an ancient term from the Rg Vedas, refers to the virtuous, continuing creation of the cosmos. [End Page 143] Seeing is Believing/ Uncertainty in View The suffix species nova is ascribed by scientists to a new bacterium species, prior to the confirmation of its existence in the appropriate academic journals. The word species means "to look" and "a class of things, living organisms capable of exchanging genes, classified as a taxonomic rank below a genus and denoted by a Latin binomial." It also refers to "the visible form of each of the elements of consecrated bread and wine in the Eucharist." Nova refers to the mistaken sighting of a new star, a flash of brightness that quickly dims. Something novel is a new kind of nature, something strange or previously unknown, and novelty refers to invention. Species nova: two words that evoke ideas about innovations of visual experience and belief.I use the phrase to denote the potential for understanding a new order and evolutionary change—"to see anew." I am also aware that species nova could mean a mistaken religious experience, or a class of living things that flashes brightly and quickly dims. Uncertainty is embedded in the richness of meanings.It is ten years since the Earth Summit in Rio popularized the notion of sustainable development and introduced Agenda 21 as a strategy to achieve it. Sadly, culture and art, two of the systems that define humanity, were not mentioned among the necessary tools for building a better future.But what is sustainable development? Is it about conservation, restoration, or regeneration? Will it stop global warming and feed the poor, or is it like candyfloss—a confection of transient comfort, with no real meaning? Has it become a corrupt cultural construct, an anthropocentric myth in the vain pursuit of hope?Recently the Intergovernmental Panel on Climate Change confirmed that "most of the warming observed over the past 50 years is attributable to human activities." However, the projections and models that have been developed for policy makers to envisage climate change scenarios demonstrate the limits of our ability to understand the situation, let alone adapt to it. A recent review in Nature, comparing two twenty-year forecasts ironically concluded: Uncertainties therefore remain that are beyond the statistical uncertainties described in the two papers. But both sets of authors point out that the upper bound on the potential warming for 2100 may well be [End Page 144] above the IPCC figure of 5.8K under 'heavy emissions' scenarios. So policy-makers should not discount the possibility of a very warm climate considering long-range policy options. (Funnel 2001, 5) A subsequent article in Nature's Climate Change Review reveals even more concern about communicating scientific uncertainty, because models that simulate long-term climate changes cannot be tested using real... (shrink)

As the potential for the first human trials of somatic cell gene therapy nears, two ethical issues are examined: (1) problems of moral choice for members of institutional review boards who consider the first protocols, for parents, and for the clinical researchers, and the special protections that may be required for the infants and children to be involved, and (2) ethical objections to somatic cell therapy made by those concerned about a putative inevitable progression of genetic knowledge (...) from therapy to mass genetic engineering in human reproduction. The author's viewpoint is that a consensus exists on the required moral approach to somatic cell therapy, but that no moral approach yet exists for experiments beyond this level, especially in the germline cells of human beings. Keywords: gene therapy, somatic cells, germ cells, institutional review boards, genetic engineering CiteULike Connotea Del.icio.us What's this? (shrink)

This paper claims rigour and sensitivity for a methodology used to explore multiple sources of data and expose the essential characteristics of a phenomenon in the human sciences. A descriptive phenomenological methodology was applied in a study of the experience of ten people with osteoarthritis receiving ginger compress therapy. The application of the phenomenological attitude, with reduction, bracketing and imaginative variation, allowed multiple sources of data – written, pictorial and oral – to be explicated. The applied methodology (...) used is described in this paper, with its six clearly defined steps illustrated by examples from the study. The findings demonstrate that phenomenological reduction enabled an indication of the potential benefits of ginger compress treatment as a therapy for people with osteoarthritis. Indo-Pacific Journal of Phenomenology , May 2010, Volume 10, Edition 1. (shrink)

In discussions of the ethics of human gene therapy, it has become standard to draw a distinction between the use of human gene transfer techniques to treat health problems and their use to enhance or improve normal human traits. Some dispute the normative force of this distinction by arguing that it is undercut by the legitimate medical use of human gene transfer techniques to prevent disease - such as genetic engineering to bolster immune function, improve the (...) efficiency of DNA repair, or add cellular receptors to capture and process cholesterol. If disease prevention is a proper goal of medicine, these critics argue, and the use of gene transfer techniques to enhance human health maintenance capacities will help achieve that goal, then the “treatment/enhancement‘ distinction cannot define the limits of legitimate gene therapy. In this paper, I argue that a line can be drawn between prevention and enhancement for gene therapy (and thus between properly medical and nonmedical uses of gene therapy), but only if one is willing to accept two rather old-fashioned claims: 1) Some health problems are best understood as if they were entities in their own right, reifiable as processes or parts in a biological system, with at least as much ontological objectivity and theoretical significance as the functions that they inhibit. 2) Legitimate preventive genetic health care should be limited to efforts to defend people from attack by these more robust pathological entities, rather than changing their bodies to evade social injustices. (shrink)