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)

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 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.

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)

The promise of genomic medicine lies in the opportunity to improve health outcomes via a personalized approach to management, grounded in genetic and genomic variation unique to an individual. However, disparities and inequities mar this remarkable landscape of genomic innovation. Prior efforts to understand these inequities have focused on populations for which genetic testing is relatively protocolized or where test utility varies greatly by ancestry groups, where equitable outcomes are more clearly defined. We therefore consider the current landscape (...) of rare disease genomics, in which diagnostic approaches vary widely and utility remains to be fully understood, and suggest a path forward: how ecosocial theory may be used to guide novel equity‐focused initiatives that incorporate illness narratives to improve population health. We present examples of narrative medicine in rare disease and reimagine the role this discipline may play in genomic sequencing studies, toward incorporation of the unique illness narrative into clinical genetics and genomics practice. Approaches that broaden the definitions of disease and of outcomes of interest will force the field to grapple with its racist history and begin to advance health equity and promote justice so that genomic medicine may truly deliver on its promise. (shrink)

Ethical debates around genetic enhancement tend to include an argument that the technology will eventually be fairly accessible once available. That we can fairly distribute genetic enhancement has become a moral defence of genetic enhancement. Two distribution solutions are argued for, the first being equal distribution. Equality of access is generally believed to be the fairest and most just method of distribution. Second, equitable distribution: providing genetic enhancements to reduce social inequalities. In this paper, I make (...) two claims. I first argue that the very assumption that genetic enhancements can be distributed fairly is problematic when considering our understanding of gene–environment interactions, for example, epigenetics. I then argue that arguments that genetic enhancements are permissible because the intended benefits can be distributed fairly as intended are misinformed. My first claim rests on the assertion that genetic enhancements do not enhance traits in a vacuum; genes are dependent on conducive environments for expression. If society cannot guarantee fair environments, then any benefit conferred from being genetically enhanced will be undermined. Thus, any argument that the distribution of genetic enhancements will be fair and that the technology is therefore morally permissible, is mistaken. (shrink)

In addressing the regulation of human genetic futures, scientific standards concerning human kinds are endorsed by philosophical approaches that tend to exclude many people with genetic conditions from the deliberative process. In broadening the axiological, ontological and epistemological framework to include disability perspectives, the focus is shifted from questions of regulation to practical matters of participation, invoking ideals of community equality and enabled choice. In developing practical community engagements to deliberate upon genetic futures, a process that allows (...) dialectical encounter between eugenic and non-eugenic approaches is envisioned so that strong versions of eugenics are avoided. (shrink)

Genetic determinism is the idea that many significant human characteristics are rendered inevitable by the presence of certain genes. The psychologist Susan Oyama has famously compared arguing against genetic determinism to battling the undead. Oyama suggests that genetic determinism is inherent in the way we currently represent genes and what genes do. As long as genes are represented as containing information about how the organism will develop, they will continue to be regarded as determining causes no matter (...) how much evidence exists to the contrary. Philip Kitcher has strongly disputed Oyama’s diagnosis, arguing that the conventional ‘interactionist’ perspective on development is the correct framework for understanding the role of the genes in development. While acknowledging the legitimacy of many of Kitcher’s observations, I believe that Oyama’s view is substantially correct. In this paper I provide several lines of support for support the Oyama diagnosis. (shrink)

John Maynard Smith has defended against philosophical criticism the view that developmental biology is the study of the expression of information encoded in the genes by natural selection. However, like other naturalistic concepts of information, this ‘teleosemantic’ information applies to many non-genetic factors in development. Maynard Smith also fails to show that developmental biology is concerned with teleosemantic information. Some other ways to support Maynard Smith’s conclusion are considered. It is argued that on any definition of information the view (...) that development is the expression of genetic information is misleading. Some reasons for the popularity of that view are suggested. (shrink)

As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in (...) the debates. Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates. (shrink)

Graphical AbstractRecent waves of controversies surrounding genetic engineering have spilled into popular science in Twitter battles between reputable scientists and their followers. Here, a cautionary perspective on the possible blind spots and risks of CRISPR and related biotechnologies is presented, focusing in particular on the stochastic nature of cellular control processes.

In decision making quite often we face permanently changeable and potentially infinite databases when we cannot apply conventional algorithms for choosing a solution. A decision process on infinite databases is called troubleshooting. A decision on these databases is called creative reasoning. One of the first heuristic semi-logical means for creative decision making were proposed in the theory of inventive problem solving by Genrich Altshuller. In this paper, I show that his approach corresponds to the so-called content-generic logic established by Soviet (...) philosophers as an alternative to mathematical logic. The main assumption of content-genetic is that we cannot reduce our thinking to a mathematical combination of signs or to a language as such and our thought is ever cyclic and reflexive so that it contains ever a history. (shrink)

Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected information and the context of the study in order to decide whether results should be offered. According to this approach, the analytic validity and the clinical utility of a specific result determine (...) whether it should be offered routinely. Different results may therefore require different decisions even within the same study. We argue that the threshold of clinical utility for disclosing a result in a research study should be lower than the threshold used for clinical use of the same result. The personal meaning of a result provides additional criteria for evaluation. Finally, the context of the study allows for a more nuanced analysis by addressing the investigators' capabilities for appropriate disclosure, participants' alternative access to the result, and their relationship with the investigators. This analysis shows that the same result may require different decisions in different contexts. (shrink)

Whilst there has been much debateregarding the importance of public acceptance ofgenetic engineering and its applications, there isevidence to indicate that objections to the technologyare likely to focus on specific applications of thetechnology, rather than genetic engineering per se.Thus it becomes important to examine the extent ofobjections associated with individual applications,rather than to assess public feeling regarding thetechnology overall. Survey data were collected from200 respondents regarding their objections to generalapplications of genetic engineering (where thetangible benefits were not obvious). (...) Similar objectiondata were collected from 200 different respondents,who were presented with specific applications withmore obvious tangible benefits. Overall patterns ofobjection to different applications were identifiedusing a novel method of objection mapping, inconjunction with analysis of variance to identifyindividual differences in the samples. For generalapplications, the results indicate that mostrespondents object less to applications involvingplants and microorganisms than to those involvinganimals or human genetic material. Individualdifferences in objection focus on applicationsinvolving animals or human genetic material, withwomen and those who are very concerned with theenvironment having greatest objections to theseapplications. Individual differences tend to reducewhen specific applications are used as stimuli,although the focus of concern is still on applicationsinvolving animals and human genetic material. However,gender differences were not statistically significant,and those respondents who have high levels ofenvironmental concern are differentiated by increasedobjections to large-scale agricultural applications.It is argued that effective communication regardingthe technology should focus on specific applications,and address issues of environmental impact within thecontext of these applications, if the public is tomake an informed choice regarding their acceptance ofthe products of the technology. (shrink)

Two families of mathematical methods lie at the heart of investigating the hierarchical structure of genetic variation in Homo sapiens: /diversity partitioning/, which assesses genetic variation within and among pre-determined groups, and /clustering analysis/, which simultaneously produces clusters and assigns individuals to these “unsupervised” cluster classifications. While mathematically consistent, these two methodologies are understood by many to ground diametrically opposed claims about the reality of human races. Moreover, modeling results are sensitive to assumptions such as preexisting theoretical commitments (...) to certain linguistic, anthropological, and geographic human groups. Thus, models can be perniciously reified. That is, they can be conflated and confused with the world. This fact belies standard realist and antirealist interpretations of “race,” and supports a pluralist conventionalist interpretation. (shrink)

v. 1. Piaget's genetic epistemology, 1965-1980.--v. 2. Critique of Piaget's genetic epistemology, 1965-1980.

The idea that a world in which everyone was born “perfect” would be a world in which something valuable was missing often comes up in debates about the ethics of technologies of prenatal testing and preimplantation genetic diagnosis . This thought plays an important role in the “disability critique” of prenatal testing. However, the idea that human genetic variation is an important good with significant benefits for society at large is also embraced by a wide range of figures (...) writing in the bioethics literature, including some who are notoriously hostile to the idea that we should not select against disability. By developing a number of thought experiments wherein we are to contemplate increasing genetic diversity from a lower baseline in order to secure this value, I argue that this powerful intuition is more problematic than is generally recognized, especially where the price of diversity is the well-being of particular individuals. (shrink)

The 1992 incorporation of an article by referendum in the SwissConstitution mandating that the federal government issue regulations onthe use of genetic material that take into account the dignity ofnonhuman organism raises philosophical questions about how we shouldunderstand what is meant by ``the dignity of nonhuman animals,'' andabout what sort of moral demands arise from recognizing this dignitywith respect to their genetic engineering. The first step in determiningwhat is meant is to clarify the difference between dignity when appliedto (...) humans and when applied to nonhumans. Several conceptions of humandignity should be rejected in favor of a fourth conception: the rightnot to be degraded. This right implies that those who have it have thecognitive capacities that are prerequisite for self-respect. In the caseof nonhuman organisms that lack this capacity, respecting their dignityrequires the recognition that their inherent value, which is tied totheir abilities to pursue their own good, be respected. This value isnot absolute, as it is in the case of humans, so it does not prohibitbreeding manipulations that make organisms more useful to humans. But itdoes restrict morally how sentient animals can be used. In regard togenetic engineering, this conception requires that animals be allowedthe uninhibited development of species specific functions, a positionshared by Holland and Attfield, as opposed to the Original Purposeconception proposed by Fox and the Integrity of the Genetic Make-upposition proposed by Rolston. The inherent value conception of dignity,as here defended, is what is meant in the Swiss Constitution article. (shrink)

The concept of genetic information is controversial because it attributes semantic properties to what seem to be ordinary biochemical entities. I argue that nucleic acids contain information in a semantic sense, but only about a limited range of effects. In contrast to other recent proposals, however, I analyze genetic information not in terms of a naturalized account of biological functions, but instead in terms of the way in which molecules determine their products during processes known as template-directed syntheses. (...) I argue that determining an outcome in a certain way is constitutive for being an instruction. On this account, the content of genetic information is identified with the template's properties, which determine the product in the way constitutive for instructions. (shrink)

The growth in the direct-to-consumer genetic testing industry poses a number of challenges for healthcare practice, among a number of other areas of concern. Several companies providing this service send their customers reports including information variously referred to as genetic ethnicity, genetic heritage, biogeographic ancestry, and genetic ancestry. In this article, we argue that such information should not be used in healthcare consultations or to assess health risks. Far from representing a move toward personalized medicine, use (...) of this information poses risks both to patients as individuals and to racialized ethnic groups because of the way it misrepresents human genetic diversity. (shrink)

Reproductive genetic technologies allow parents to decide whether their future children will have or lack certain genetic predispositions. A popular model that has been proposed for regulating access to RGTs is the ‘genetic supermarket’. In the genetic supermarket, parents are free to make decisions about which genes to select for their children with little state interference. One possible consequence of the genetic supermarket is that collective action problems will arise: if rational individuals use the (...) class='Hi'>genetic supermarket in isolation from one another, this may have a negative effect on society as a whole, including future generations. In this article we argue that RGTs targeting height, innate immunity, and certain cognitive traits could lead to collective action problems. We then discuss whether this risk could in principle justify state intervention in the genetic supermarket. We argue that there is a plausible prima facie case for the view that such state intervention would be justified and respond to a number of arguments that might be adduced against that view. (shrink)

There is a paradox lying at the heart of the study of heredity. To understand the ways in which features are passed down from one generation to the next, we have to dig deeper and deeper into the ultimate nature of things - from organisms, to genes, to molecules. And yet as we do this, increasingly we find we are out of focus with our subjects. What has any of this to do with the living, breathing organisms with which we (...) started? Organisms are living. Molecules are not. How do we relate one to the other? In Genetic Analysis, one of the most important empirical scientists in the field in the twentieth century attempts, through a study of history and drawing on his own vast experience as a practitioner, to face this paradox head-on. His book offers a deep and innovative understanding of our ways of thinking about heredity. (shrink)

Genetic database initiatives have given rise to considerable debate about their potential harms and benefits. The question arises as to whether existing ethical frameworks are sufficient to mediate between the competing interests at stake. One approach is to strengthen mechanisms for obtaining informed consent and for protecting confidentiality. However, there is increasing interest in other ethical frameworks, involving solidarity — participation in research for the common good — and the sharing of the benefits of research.

Given the rise of genetic etiological beliefs regarding psychiatric disorders, a growing body of research has focused on trying to elucidate the effects that such explanatory frameworks might be having on how mental disorders are perceived by patients, clinicians, and the general public. Genetic and other biomedical explanations of mental disorders have long been seen as a potential tool in the efforts to destigmatize mental disorders, given the harshness of the widespread negative attitudes about them and the important (...) negative clinical and social impacts of this stigma. The conventional wisdom has appeared to be that because the effects of genes are seen as falling outside individual control, conceiving of mental disorders as caused by genes casts patients as blameless, thereby reducing stigmatization. Indeed, the results of experimental and correlational research have now robustly linked genetic and other biomedical explanations for mental disorders with reductions in the extent to which people are blamed for their psychiatric symptoms. However, research examining the impact of genetic and other biomedical explanations of mental disorders has also suggested that they can have significant downsides. The most consistently observed negative effect of these kinds of explanations is that they can apparently lead to the assumption that mental disorders are unlikely to improve or abate. Genetic and other biomedical explanations of mental disorders can also increase people’s confidence in the effectiveness of biomedical treatments (such as pharmacotherapy) but decrease their confidence in the effectiveness of “nonbiomedical” treatments (such as psychotherapy). (shrink)

(2001). The Challenge of Genetic Engineering to Medical Anthropology and Ethics. Human Reproduction & Genetic Ethics: Vol. 7, No. 1, pp. 21-25.

The genetic code is a set of instructions that determine how the information in our genetic material is translated into amino acids. In general, it is universal for all organisms, from viruses and bacteria to humans. However, in the last few decades, exceptions to this rule have been identified both in pro‐ and eukaryotes. In this review, we discuss the 16 described alternative eukaryotic nuclear genetic codes and observe theories of their appearance in evolution. We consider possible (...) molecular mechanisms that allow codon reassignment. Most reassignments in nuclear genetic codes are observed for stop codons. Moreover, in several organisms, stop codons can simultaneously encode amino acids and serve as termination signals. In this case, the meaning of the codon is determined by the additional factors besides the triplets. A comprehensive review of various non‐standard coding events in the nuclear genomes provides a new insight into the translation mechanism in eukaryotes. (shrink)

What does the prospect of being able to alter a human being's “natural assets” by genetic engineering imply for our understanding of the requirements of justice, and of equal opportunity in particular? Although their proponents are reluctant to admit it, some of the most prominent contemporary theories of justice yield a quite radical conclusion: If safe and effective intervention in the genetic “natural lottery” becomes feasible, there will be at least a strong prima facie case for doing so (...) in the name of equality of opportunity , if this is the most effective way to meet the demands of justice. (shrink)

Die Geschichte der genetischen Pränataldiagnostik ist bislang als Teil der Geschichte der Humangenetik und deren Neuorientierung als klinisch-laborwissenschaftliche Disziplin in der zweiten Hälfte des 20. Jahrhunderts betrachtet worden. Anhand neuen Quellenmaterials soll in diesem Beitrag gezeigt werden, dass das Interesse an der Pränataldiagnostik in Westdeutschland auch im Kontext von Forschungen entstand, die sich mit Gefahren für den Menschen in der Umwelt befassten. Anhand der Debatten um die Einrichtung des DFG-Schwerpunktprogramms „Pränatale Diagnostik genetischer Defekte“ 1970 untersuchen wir, wie die Technik der (...) Amniozentese in Westdeutschland von einer interdisziplinären Forschungsgruppe eingeführt wurde, die sich mit Schädigungen des Organismus durch Strahlen, Arzneimittel und andere Gebrauchsstoffe und Konsumgüter befasste. In einer als ökologische Wende bezeichneten Zeit wachsenden Umweltbewusstseins, so unsere These, sollte durch die Förderung der Pränataldiagnostik eine wahrgenommene Lücke in der Prävention umweltbedingt auftretender genetischer Anomalien geschlossen werden. Für die Pränataldiagnostik als „Schutzmaßnahme“ sprach unter anderem ihre erwartete Finanzierung als Krankenkassenleistung im Zuge der Reform des Abtreibungsrechts. Erst in einem zweiten Schritt führten Veränderungen von Strukturen der Forschung, vor allem aber Erfahrungen in der gynäkologischen Praxis zu einer Neuausrichtung auf die Diagnostik und Prävention mehrheitlich erblicher oder spontan auftretender Anomalien. Die Pränataldiagnostik, so wie sie schließlich in Westdeutschland ab den frühen 1980er Jahren routinemäßig Einsatz fand, hatte mit Fragen der „Umwelt“ kaum noch zu tun. Diese Fallstudie zur Frühgeschichte der genetischen Pränataldiagnostik handelt von dem noch wenig untersuchten Verhältnis von humangenetischer Forschung, klinischer Praxis und Umweltforschung und hat zum weiteren Ziel, den bisher in anderen Kontexten beschriebenen Wandel von Perspektiven in der Vorsorge um 1970 zu beleuchten. (shrink)

Darwinian evolutionary theory has two key terms, variations and biological selection, which finally lead to survival of the fittest variant. With the rise of molecular genetics, variations were explained as results of error replications out of the genetic master templates. For more than half a century, it has been accepted that new genetic information is mostly derived from random error-based events. But the error replication narrative has problems explaining the sudden emergence of new species, new phenotypic traits, and (...) genome innovations as a sudden single event. Meanwhile, it is recognized that errors cannot explain the evolution of genetic information, genetic novelty, and complexity. Now, empirical evidence establishes the crucial role of non-random genetic content editors, such as viruses, diversity generating retroelements, and other RNA networks, to produce new genetic information, complex regulatory control, inheritance vectors, genetic identity, immunity, new sequence space, evolution of complex organisms, and evolutionary transitions. (shrink)

We seek to develop a plausible conception of genetic parenthood, taking a recent discussion by Heidi Mertes as our point of departure. Mertes considers two conceptions of genetic parenthood—one invoking genetic resemblance, and the other genetic inheritance—and presents counter-examples to both conceptions. We revise Mertes’ second conception so as to avoid these and related counter-examples.