Excerpt: 1. Introduction This chapter provides insight into the diverse ethical debates on genetics and epigenetics. Much controversy surrounds debates about intervening into the germline genome of human embryos, with catchwords such as genome editing, designer baby, and CRISPR/Cas. The idea that it is possible to design a child according to one’s personal preferences is, however, a quite distorted view of what is actually possible with new gene technologies and gene therapies. These are much more limited than the editing and (...) design metaphors suggest. Such metaphors are therefore highly problematic phrases in the context of new gene technologies, for two reasons. On one hand, to design a child of choice by modifying the genome would require modifying any gene of choice, which is more than can be done with current gene technologies, such as CRISPR/Cas. On the other hand, a modification of genes would need to be enough to create any characteristic of choice in the future child. The latter presupposes the assumption of genetic determinism. Moreover, the CRISPR/Cas technology can not only be used in a potentially therapeutic manner at the germline level. In addition, there is the (more likely) scenario of a future clinical therapeutic use of these new gene technologies for modifying the DNA sequence of other cells of the body (somatic genome editing). There is also the option of modifying the epigenome, that is, the spatial configuration of DNA (epigenome editing) (see table 1). Like genetics and genome editing, epigenetics has been at the center of recent popular scientific and ethical discourse as well as scientific debates. The concept of epigenetics has given rise to very different notions of inheritability and responsibility for health, which, however, are oftentimes based on scientifically controversial basic assumptions. That there continues to be covert genetic determinism in the form of epigenetic determinism (see table 2) in debates about epigenetics has been pointed out in ethical analyses of epigenetics. Neither genetic determinism nor epigenetic determinism has been confirmed scientifically. It is therefore important to recognize the concepts that are discussed (and sometimes harshly criticized) in debates about genome editing and epigenetics—for example, concepts about the causal role of DNA for our own life course. This importance is based on the fact that if we understand such controversial concepts, we will be able to remain critical when evaluating scientific knowledge and ethical arguments about genome editing and epigenetics. This chapter, therefore, explains some of these concepts. For an ethical analysis of epigenetics as well as of genome editing, it is necessary to understand and critically reflect upon the underlying concepts of genetic determinism and other, related -isms. The following section offers a detailed introduction to these -isms (section 2; see also table 2). Section 3 provides an ethical analysis of genome editing and epigenetics based on the explanations in section 2. Section 3 focuses on inheritability and responsibility, justice, safety, the problem of consent, and the effects of genome editing and epigenetics on embryos and future generations. This section does not discuss in detail further points that can be found in ethical debates about epigenetics as well as in ethical debates about genome editing. These points include (among others): • fear that the findings of epigenetics and that the methods of genome editing are misused—this also with respect to eugenics and enhancement; • naturalness—an issue we mention in passing a few times in the following analysis; • a possible connection between the genome/epigenome and the concept of human dignity, and the derived danger of instrumentalization and infringement of autonomy when intervening in the genome or epigenome. Since current discourse about ethical issues associated with genome editing focuses mainly on germline interventions, which are, for instance, interventions into a human embryo’s genome, we mainly focus on germline interventions when comparing the debates on genome editing and on epigenetics in section 3. (shrink)

To clarify concerns that the public has with genetic technologies, the article presents the results of focus group interviews conducted in Denmark in 2000. The concerns of the public are divided into three ideal-typical categories: social, economic, and cultural. Following a general discussion of why it is important to take these discourses of concern seriously, each discursive category is discussed with examples taken from the focus group interviews.

Genetic testing can not only provide information about diseases but also their prevalence in ethnic, gender, or other vulnerable populations. While offering the promise of significant therapeutic benefits and serving to highlight our commonality, genetic information also raises a number of sensitive human rights issues touching on identity and the perception thereof, as well as the possibility of discrimination and social stigma. It stands to reason that the results of individual screenings could haplessly be used to make general (...) assumptions about entire ethnic or gender groups. In this manner, genetic information can directly influence identity by impacting and perhaps even reframing conceptions of group rights and dimensions of self-identification, thus importing constitutional scrutiny on questions of dignity and discrimination in particular. Is there a risk of collective stigmatization deriving from discrete testing of self-identified individuals? Would such stigmatization impinge on individual dignity by the exogenous imposition of ethnic or gender/sexual identity? If so, what norms can most adequately respond if and when individual and group interests diverge? These questions are examined from a comparative perspective. (shrink)

“Privacy considerations no longer arise out of particular individual problems; rather, they express conflicts affecting everyone.”Along with the promise of assuaging the scourge of disease, the so-called genetic revolution unquestioningly imports a slew of thorny human rights issues that touch on matters such as dignity, disclosure, and the subject of this article – genetic testing and the social stigma potentially deriving therefrom.It is now rather evident that certain otherwise therapeutically promising forms of research can inadvertently involve social risks (...) exceeding the individual preoccupations of eclectic study participants. With that as the case, the following proposes to examine the peculiar stigma attached to genetic information and its potential human rights implications extending beyond the insurance and employment context. In so doing, it raises the intersection of interests between self-identified members of historically vulnerable groups and the group itself, which the law seems to take for granted in the genetics context. (shrink)

The use of genetically modified plants in agriculture (GM crops) is controversially discussed in academic publications. Important issues are whether the release of GM crops is beneficial or harmful for the environment and therefore acceptable, and whether the modification of plants is ethically permissible per se . This study provides a comprehensive overview of the moral reasoning on the use of GM crops expressed in academic publications from 1975 to 2008. Environmental ethical aspects in the publications were investigated. Overall, 113 (...) articles from 15 ecology, environmental ethics, and multidisciplinary science journals were systematically reviewed. Three types of moral concerns were used to structure the normative statements, moral notions, and moral issues found in the articles: concerns addressing consequences of the use of GM crops, concerns addressing the act (the technique itself), and concerns addressing the virtues of an actor. Articles addressing consequences (84%) dealt with general ecological and risk concerns or discussed specific ecological issues about the use of GM crops. Articles addressing the act (57%) dealt with the value of naturalness, the value of biotic entities, and conceptual reductionism, whereas articles addressing the actor (43%) dealt with virtues related to the handling of risks and the application of GM crops. The results of this study may help to structure the academic debate and contribute to a better understanding of moral concerns that are associated with the key aspects of the ethical theories of consequentialism, deontology, and virtue ethics. (shrink)

Current problems and controversies involving GM issues are not limited to scientific fields but spill over into the social context. When disagreements enter society via media outlets, social factors such as interests, resources, and values can contribute to complicating discourse about a controversial subject. Using the framework for the analysis of media discourse proposed by Carvalho, this paper examines news reports on Chinese GM rice from the dimensions of both text and context, covering the period of 2001–2015. This (...) study shows that media may not only construct basic concepts, theme, and discursive strategies but also generate an ideological stance. This ideology constituted an influential dimension of the GM rice controversy. By following ideology consistent with the dominant position of the Chinese government, the media selectively constructed and endowed GM rice with a specific meaning in the Chinese social context, making possible the reproduction and communication of GM rice knowledge and risks to the public. (shrink)

Decisions concerning use of gene therapy will probably not be made within the privacy of what was once a dyadic doctor–patient relationship. More likely, some overarching guidelines will emerge directing or limiting the practice. Debate and position-taking over the myriad scientific, social, ethical, legal, and political implications of research into and manipulation of the human genome has intensified since the U.S. government officially launched the Human Genome Project in 1988 by appropriating funds to the Department of Energy and the National (...) Institutes of Health for genome research. The discourse this costly research endeavor has generated in the scientific and bioethics literature and even in the popular press outlines a host of issues likely to evoke attempts at line drawing and policymaking. Many of these issues lend themselves easily to the shorthand of dualistic opposition: somatic cell therapy versus germ line therapy or engineering ; correction of defects and disease only versus enhancement of conditions not considered defects or diseases; intervening on the basis of phenotype only versus intervening on the basis of genotype also. (shrink)

Recent developments in genomic technology, especially those enabling gene editing, promise to put an end to hitherto intractable medical problems and to usher us into the age of personalized medicine. These technologies, however, raise a number of serious ethical challenges. Given the global impact of this technology, recent international regulations emphasize the need for intercultural dialogue on these ethical issues. This paper concentrates on Islamic perspectives on human genetic modification. It examines Islamic juristic discourses on the issue of (...) class='Hi'>genetic modification and highlights the different layers within these discourses. The paper identifies the main positions regarding human genetic modification along with the underlying arguments for each of them. In general, these positions are articulated in light of the nature as well as the intended objectives of the different procedures. The paper devotes special attention to the treatment-enhancement distinction and argues that within Islamic discourses this distinction is quite nuanced. The paper points out important substantive and methodological gaps and emphasizes the evolving nature of Islamic discourses on this issue. (shrink)

Recent developments in genomic technology, especially those enabling gene editing, promise to put an end to hitherto intractable medical problems and to usher us into the age of personalized medicine. These technologies, however, raise a number of serious ethical challenges. Given the global impact of this technology, recent international regulations emphasize the need for intercultural dialogue on these ethical issues. This paper concentrates on Islamic perspectives on human genetic modification. It examines Islamic juristic discourses on the issue of (...) class='Hi'>genetic modification and highlights the different layers within these discourses. The paper identifies the main positions regarding human genetic modification along with the underlying arguments for each of them. In general, these positions are articulated in light of the nature as well as the intended objectives of the different procedures. The paper devotes special attention to the treatment-enhancement distinction and argues that within Islamic discourses this distinction is quite nuanced. The paper points out important substantive and methodological gaps and emphasizes the evolving nature of Islamic discourses on this issue. (shrink)

This paper undertakes a content analysis of newspaper articles from Australia, the UK, and the US concerned with a variety of issues relevant to sustainable food and agriculture from 1996 to 2002. It then goes on to identify the various ways in which sustainability, organic food and agriculture, genetic engineering, genetically modified foods, and food safety are framed both in their own terms and in relation to each other. It finds that despite the many competing approaches to sustainability found (...) in scientific and agricultural production discourses, media discourses tend to reduce this complexity to a straightforward conflict between organic and conventional foods. Despite regular reporting of viewpoints highly critical of organic food and agriculture, this binary opposition produces discourses in which organic foods are seen as more-or-less synonymous with safety, naturalness and nutrition, and their alternatives as artificial, threatening, and untrustworthy. Particularly controversial food-related issues such as genetic engineering, food scares, chemical residues, and regulatory failure are treated as part of the same problem to which organic food offers a trustworthy and easily understood solution. (shrink)

The article presents a model of understanding that takes into account interaction, cultural knowledge, and the constraints of organizations and institutions. It analyzes discourse and cognition in high school biology classes and clinical consultations involving discussions of genetics. The analytical lenses of constraint satisfaction, coherence-based reasoning, and collective cognition reveal multilayered social, cultural, and interactional components of authority and agency that influence understanding. The analysis reveals similarities across settings in discourse structure and the ways that participants relate to (...) local constraints. In both types of settings, participants attempt to develop process narratives that present a sequential or causal relationship between information and lead to remembered understandings of concepts. However, the absence of certain process information that links terms or concepts functions like a missing plot point in a story, hindering the development of process narratives and understandings. In order to cover such information gaps, students and patients construct and display grey boxes. In addition to talk and text, these consist of various actions and resources specific to a local discourse framework such as pointing at graphics, tabular information, and symbols. Grey boxes satisfy the organizational constraints of time, resources, and task structure that affect interaction related to understanding concepts and procedures, but their connection to a particular discourse framework restricts the transfer of knowledge between settings. The power of medical practitioners and teachers to enhance or restrict understandings relates to the ways that they accommodate the use of grey boxes during interactions with clients and students. Professional frames of reference that teachers or practitioners apply to task interactions may constrain the ways students or clients apply grey boxes and process narratives. Awareness of the functions of process narratives and grey boxes presents opportunities to modify local discourse frameworks and increase understandings of concepts, medical conditions, and treatment options. (shrink)

An important aspect of any meaningful public discussion about developments in gene technology is the provision of opportunities for interested publics to engage in sociable public discourse with other lay people and with experts. This article reports on a series of peer group conversations conducted in late 1996 and early 1997 with sixteen community groups in Perth, Western Australia, interested in gene therapy technology. With the case of cystic fibrosis as a particular focus, and using background resource material as (...) a stimulus for discussion, the participating groups explored a range of value issues arising from the new genetic medicine. This more discursive context enabled participants to express a number of background or life-world concerns about genetic medicine, concerns that are often obscured by the dominant biomedical and bioethical discourses. (shrink)

Abstract This paper is a close textual criticism of Theodosius Dobzhansky's Genetics and the Origin of Species. It argues that the book succeeds as interdisciplinary communication by promoting polysemy. The professional goals of two scientific communities are embedded in the text in such a way that each audience reads the call for co?operative action as implicit support for their own methods.

Imagine a world where everyone is healthy, intelligent, long living and happy. Intuitively this seems wonderful, albeit unrealistic. However, recent scientific developments in genetic engineering, namely CRISPR/Cas bring the question into public discourse, how the genetic enhancement of humans should be evaluated morally.

Imagine a world where everyone is healthy, intelligent, long living and happy. Intuitively this seems wonderful albeit unrealistic. However, recent scienti c breakthroughs in genetic engineering, namely CRISPR/Cas bring the question into public discourse, how the genetic enhancement of humans should be evaluated morally. In 2001, when preimplantation genetic diagnosis (PGD) and in vitro fertilisation (IVF), enabled parents to select between multiple embryos, Julian Savulescu introduced the principle of procreative bene cence (PPB), stating that parents have (...) the obligations to choose the child that is expected to have the best life. In this paper I argue that accepting the PPB and the consequentialist principle (CP) that two acts with the same consequences are morally on par, commits one to accepting the parental obligation of genetically enhancing one's children. (shrink)

The so-called “conciliatory” norm in epistemology and meta-ethics requires that an agent, upon encountering peer disagreement with her judgment, lower her confidence about that judgment. But whether agents actually abide by this norm is unclear. Although confidence is excessively researched in the empirical sciences, possible effects of disagreement on confidence have been understudied. Here, we target this lacuna, reporting a study that measured confidence about moral beliefs before and after exposure to moral discourse about a controversial issue. Our findings (...) indicate that participants do not abide by the conciliatory norm. Neither do they conform to a rival “steadfast” norm that demands their confidence to remain the same. Instead, moral discourse seems to boost confidence. Interestingly, we also find a confidence boost for factual beliefs, and a correlation between the extremity of moral views and confidence. One possible explanation of our findings is that when engaging in moral discourse participants become more extreme in their opinions, which leads them to become more confident about them, or vice versa: they become more confident and in turn more extreme. Although our work provides initial evidence for the former mechanism, further research is needed for a better understanding of confidence and moral discourse. (shrink)

Where feminist critiques of bioscience have uncovered a whole set of operations that range round the Foucauldian notions of biopower and normativity, and have explored genetic discourse in particular to question the stability of self-identity, feminist bioethics has lagged behind. Despite an engagement with the technologies of postmodernity, including those associated with genetic research (and especially in its relation to reproduction), there has been, with relatively few exceptions, a reluctance to explore the implications of postmodernist theory. The (...) difficulty is that bioscience itself is now throwing up a problematic that destabilizes the central agent of ethical theory - the modernist sovereign subject. Using the field of genetics and the mapping of the human genome as a focal point, this paper suggests that bioethics should move on from conventional analytic strategies and, like feminist science studies, embrace uncertainty and complexity. The task is to fashion a new form of ethical response grounded in the notions of embodied connection and fluidity. (shrink)

We will analyse the representations and conceptualisation of genetics and genetic information in bioethical discourse. Genetics and genetic information is widely believed to be revolutionizing medicine and is sometimes misconceived as having a high predictive value compared to traditional diagnostics. We will attempt to present the inherent limitations of genetic information within its health care context. We␣will also argue against the exceptional treatment of genetic information that seems to govern bioethical reflection and regulatory approaches. And (...) finally, we will make the claim that geneticization should be seen as a more serious threat to our privacy, autonomy and freedom, than genetic discrimination. (shrink)

From the 1960s, mathematical and computational tools have been developed to arrive at human population trees from various kinds of serological and molecular data. Focusing on the work of the Italian-born population geneticist Luigi Luca Cavalli-Sforza, I follow the practices of tree-building and mapping from the early blood-group studies to the current genetic admixture research. I argue that the visual language of the tree is paralleled in the narrative of the human diasporas, and I show how the tree was (...) actually mapped onto the surface of the earth. This visual and textual structure is mirrored in the liberal discourse of unity in diversity that has been criticized as running counter to the socio-political effects of human population genetics. From this perspective, one may ask how far the phylogenetic diagram in its various forms is a manifestation of the physics of power that according to Michel Foucault consists in mechanisms that analyse distributions, movements, series, combinations, and that uses instruments to render visible, to register, to differentiate and to compare. It is one among other disciplinary technologies that ensure the ordering of human diversity. In the case of intra-human phylogenetic trees, population samples and labels are one issue. Another is that the separated branches seem to show groups of people, who have in reality been interacting and converging, as isolated. Often based on so-called isolated peoples, molecular tree diagrams freeze a hierarchical kinship system that is meant to represent a state before the great historical population movements. (shrink)

In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination and the rights of individuals. In the medical sphere, the recognition of patient "rights" has resulted in health professionals being given clear duties of candour and frankness. Dilemmas arise, however, (...) when patients decline to know relevant information or, knowing it, refuse to share it with others who may also need to know. This paper considers the notions of interconnectedness and responsibility to others which are brought to the fore in the genetic sphere and which challenge the primacy afforded to personal autonomy. It also explores the extent to which an individual's perceived moral obligations can or should be enforced. (shrink)

This article analyzes the main reasons offered by the literature in relation to the question of whether pre-implantation genetic diagnosis and selection should be allowed in the context of assisted reproduction techniques to avoid the birth of children with disabilities. The bioethical literature faces a challenge from the disability discourse. When the oppressive social dimension of disability is taken into account, it results in a series of questions that could challenge the most settled conclusions of the bioethical debate. (...) However, the social model has not been without criticism and one of them, the underestimation of the importance of biological traits origin against a disability of social origin, resonates particularly in the debate on preimplantation genetic selection. (shrink)

Using ideas from evolution and postformal stages of hierarchical complexity, a hypothetical scenario, premised on genetic engineering advances, portrays the development of a new humanoid species, Superions. How would Superions impact and treat current humans? If the Superion scenario came to pass, it would be the ultimate genocidal terrorism of eliminating an entire species, Homo Sapiens. We speculate about defenses Homo Sapiens might mount. The tasks to relate two species (systems) constitutes a postformal, Metasystematic task. Developing a system of (...) discourse to prevent destruction requires postformal Paradigmatic-stage tasks. Implications are twofold: species survival and sufficient evolution to survive. (shrink)

Since the inception of the Human Genome Project, human genetics has frequently been conducted through big science projects, combining academic, state and industrial methods, interests and resources. The legitimacy of such projects has been linked to national prestige and images of the nation, the purity of scientific endeavour, the entrepreneurial spirit, medical progress and the public health. A key complication in these discourses is that large-scale genetic research has yet to show major results when considered in terms of the (...) objectives used to legitimate investment and social support for these projects. The main area showing promise at present is the developing field of pharmacogenetics, which is now attracting major industry and government investment. Sociological, ethical and philosophical study of human genetic sample-based research and pharmacogenetics has developed in parallel with inquiry in the biological and biomedical sciences. This paper introduces a symposium on the ethical and social aspects of this field of biomedical research. (shrink)

Biotechnology might contribute to solving food safety and security challenges. However, gene technology has been under public scrutiny, linked to the framing of the media and public discourse. The study aims to investigate people’s perceptions and acceptance of food biotechnology with focus on transgenic genetic modification versus genome editing. An online experiment was conducted with participants from the United Kingdom and Switzerland. The participants were presented with the topic of food biotechnology and more specifically with experimentally varied vignettes (...) on transgenic and genetic modification and genome editing. The results suggest that participants from both countries express higher levels of acceptance for genome editing compared to transgenic genetic modification. The general and personal acceptance of these technologies depend largely on whether the participants believe the application is beneficial, how they perceive scientific uncertainty, and the country they reside in. Our findings suggest that future communication about gene technology should focus more on discussing trade-offs between using an agricultural technologies and tangible and relevant benefits, instead of a unidimensional focus on risk and safety. (shrink)

Background: Preimplantation genetic testing is used in In Vitro Fertilization to identify genetic abnormalities in embryos. Genetically defective embryos are not transferred to the uterus, resulting in a higher percentage of healthy babies born. Aim: to study the ethical problems of using preimplantation genetic testing in Orthodox Christian discourse. Materials and methods: An analysis of the provisions of Orthodox ethics, expressed in the church resolutions of the Russian Orthodox Church and the general church teaching on morality, (...) was carried out in the context of their application for the biotic analysis of preimplantation genetic testing. Results: Despite the fact that PGT can have positive implications for the choice of the mode of delivery later on and for the earliest possible initiation of intrauterine treatment, this practice meets with certain ethical objections in Orthodox Christian discourse. Identified genetic abnormalities of embryos in PGT encourage women to refuse to transfer the "diseased" embryo, leading ultimately to its death. The absence of intrauterine interaction between a mother and an embryo makes such a choice easily feasible. Given that Orthodox Christianity affirms the beginning of human life from the moment of conception, refusing to become pregnant with a "sick embryo" would be tantamount to its murder. In addition, among the ethical problems of PGT is the possibility of the use thereof for the embryo selection according to sex or other chosen characteristics, which also belongs to immoral actions in Orthodox Christianity. Conclusion: Thus, the possibility for Orthodox couples to participate in assisted reproductive technology must exclude the use of pre-implantation genetic testing, which is ethically unacceptable within Orthodox Christianity. The couple starting IVF should be ready to give birth and bring up such a child, who will be the result of the fertilization in vitro. (shrink)

There is an ongoing debate about genetic engineering (GE) in food production. Supporters argue that it makes crops more resilient to stresses, such as drought or pests, and should be considered by researchers as a technology to address issues of global food security, whereas opponents put forward that GE crops serve only the economic interests of transnational agrifood-firms and have not yet delivered on their promises to address food shortage and nutrient supply. To address discourse failure regarding the (...) GE debate, research needs to understand better what drives the divergent positions and which moral attitudes fuel the mental models of GE supporters and opponents. Hence, this study investigates moral attitudes regarding GE opposition and support in Germany. Results show that GE opponents are significantly more absolutist than supporters and significantly less likely to hold outcome-based views. Furthermore, GE opponents are more willing to donate for preventing GE admission than supporters are willing to donate for promoting GE admission. Our results shed light on why the divide between opponents and supporters in the German GE debate could remain stark and stable for so long. (shrink)

Since the inception of the Human Genome Project, human genetics has frequently been conducted through big science projects, combining academic, state and industrial methods, interests and resources. The legitimacy of such projects has been linked to national prestige and images of the nation, the purity of scientific endeavour, the entrepreneurial spirit, medical progress and the public health. A key complication in these discourses is that large-scale genetic research has yet to show major results when considered in terms of the (...) objectives used to legitimate investment and social support for these projects. The main area showing promise at present is the developing field of pharmacogenetics, which is now attracting major industry and government investment. Sociological, ethical and philosophical study of human genetic sample-based research and pharmacogenetics has developed in parallel with inquiry in the biological and biomedical sciences. This paper introduces a symposium on the ethical and social aspects of this field of biomedical research. (shrink)

Technical advances in genome editing methods raise the question how autonomy should figure in theological ethical debates about genetic enhancements. Thinking primarily of the parents’ reproductive autonomy, several secular and theological thinkers argue parents should be allowed to ‘enhance’ an embryo genetically. Jürgen Habermas’s critique of enhancements in the name of the child’s autonomy, meanwhile, has been met with a critique of autonomy in theology. This article argues that theological views about God’s relationship to the creature provide strong theological (...) grounds for a new appropriation of autonomy. A liberal maximisation of individual choice is to be viewed critically, but more recent discourses on relational autonomy see certain forms of vulnerability contribute to a communal understanding of autonomy. This view dovetails with Habermas’s argument, according to which enhancements create too strong a temptation towards overly directive parenting—less in modifying an embryo than in the ensuing relationship to the child. (shrink)

There has been increasing attention given to the way in which racial genetic clusters are constructed within population genetics. In particular, some scholars have argued that the conception of “whiteness” presupposed is such analyses is inherently problematic. In light of these ongoing discussions, this article aims to further clarify and develop this implicit relationship between whiteness, purity and contemporary genetics by offering a Foucauldian critique of the discourse of race within these genetic admixture studies. The goals of (...) this article, then, are twofold: first, to unearth some of the presuppositions operative in this genetics discourse that make possible a biological conception of race; and second, to examine some of the social and historical origins of those presuppositions. To this end, this article provides a brief genealogy of racial purity beginning with its formal legal codification in the one-drop rule. (shrink)

This paper discusses the discourse of ‘participation’ in the context of genetic databases. Focusing on UK Biobank, it suggests that this discourse can be seen as a reflexive institutional response to public ambivalence towards science and expertise. Drawing on empirical evidence from focus groups, I explore how people from various backgrounds constructed and contested two different kinds of participation in UK Biobank. The first relates to people providing research materials to genetic databases and the second to (...) people becoming ‘co-decision makers’ in these projects. My analysis highlights how focus groups positioned themselves and others in relation to UK Biobank and drew on a variety of ‘discursive repertoires’, such as altruism, public ignorance, expertise, and lay empowerment. I conclude that discourses of participation reflect the way people position themselves and others - as experts, publics, patients, or research subjects - in relation to the opportunities and uncertainties of new biomedical research. (shrink)

Surrogacy is an encouraging management for many childless couples and can hypothetically resolve many unbearable pain that they are confronted. Initially surrogacy treatment was frowned upon, however, surrogacy is more popularly accepted now a day. Though, surrogacy has not yet recognized by 199 country in the globe. Different country has different regulations on surrogacy. However, “there are some indication of the degree of divergence between official discourse and actual practice of surrogacy throughout world”. There are positive changes in attitude (...) toward surrogacy has been seen in some countries. This special issue of Bangladesh Journal of Bioethics has been organized on surrogacy to see the current thinking of surrogacy around the world and how people come out from the social, religious and political framework. (shrink)

Population genomics seeks to better understand genomic diversity and variation at the level of populations. Numerous ethical questions are raised by large studies of human genomic diversity. First, at the level of ethical means, the confidentiality of the genetic data obtained and its handing are challenging. Second, at the more fundamental level of ethical goals or ends, we find questions concerning the meaning and the interpretation of genetic knowledge. What shall we do with this knowledge? Who will decide (...) research orientation and priorities? Ethical questions raised by population genomics imply those of “classical genomics,” but they have the additional ethical complexity of research done on populations. How should we take this particular aspect into account? (shrink)

The concept of responsibilization that originally emerged out of the context of the so-called Governmentality Studies is now widely used in various social sciences to describe a governing technology particularly attuned to the challenge of neoliberalism, i.e. how to govern free individuals. However, in seemingly paradoxical simultaneity with the hegemeony of neoliberalism that relies heavily on individual choice, freedom and responsibility, two powerful scientific discourses exist that appear to undermine these assumptions vehemently, namely genetics and neuroscience. Starting from a discussion (...) of the strengths and limits of the notion of responsibilization, the article argues for the need to introduce the complementary concept of irresponsibilization that can be interpreted as a form of what Foucault in his lectures on the History of Governmentality refers to as ‘counter-conduct’ – in this case, against the neoliberal governing technology of responsibilization. The article proceeds to explore to what extent genetics and neuroscience can be considered discourses fuelling forms of genetic and/or neuro-irresponsibilization, which would make sense of the seemingly paradoxical co-hegemony of neoliberalism, on the one hand, and genetics and neuro-science, on the other. However, the article ultimately argues that, upon closer inspection of the findings in these disciplines and how they are used, it turns out that constituting oneself as a ‘somatic individual’ as a form of counter-conduct comes at a considerable cost, notably new forms of genetic and/or neuro-responsibility. Thus, the article closes with the twofold conclusion that wherever there is responsibilization, there is also irresponsibilization and that genetic and neuro-irresponsibilization are risky strategies of counter-conduct that might bring in responsibilization on a different level through the back door again. (shrink)

The issue of genetic inheritance, and particularly the contradictory rights of donors, recipients and donor offspring as to the disclosure of donor identities, is ethically complicated. Donors, donor offspring and parents of donor offspring may appeal to individual rights for confidentiality or disclosure within legal systems based on liberal rights discourse. This paper explores the ethical issues of non-disclosure of genetic inheritance by contrasting two principle models used to articulate the problem—liberal and communitarian ethical models. It argues (...) that whilst the latter provides a more constructive avenue to providing an ethics for donation than the competing and contradictory positions represented in a liberal rights approach, it raises issues of ethical judgement and authority that remain problematic. This ethical discussion is supported by a field study, funded by the Wellcome Trust, exploring the perceptions and experiences of recipients of donor sperm and their partners towards donor anonymity. The field study provides the empirical basis of an argument for making ethical judgements on the grounds of the community good rather than individual rights, that nevertheless recognises that both are inherently problematic. (shrink)

The controversies over genetically modified crops in India involve what Gieryn refers to as ‘boundary work’ in the ongoing competition for credibility and trustworthiness among claimsmakers with opposing points of view. Discourse about GM crops involves extensive drawing of boundaries by actors including policymakers, technocrats, NGOs, scientists, industrialists, and farmers. The issues raised range from governmental processes to moral and ethical implications, from environmental consequences to integration into the global economy. Those involved in these discussions frequently invoke the idealized (...) notions of farmers and farming in order to situate themselves within the boundary of a particular social category which may lend credibility to their claims. While Gieryn has focused primarily on scientists’ attempts to construct a boundary between science and non-science in order to establish themselves as experts, strengthen the credibility of their claims and avoid political interference in their intellectual activities, this article focuses on a different way in which knowledgeable and influential actors lay claim to trustworthiness by drawing a different kind of social boundary around themselves. This article will especially focus on the ways in which the category of farmers is used in the GM crop controversies by actors who are in a position to influence public policies regarding GM crops, especially in their efforts to justify their policy prescriptions. The thesis here is that GM crop controversies in India reflect elite actors’ attempts to compete for a shared social identity with farmers, thus constructing a context for the particular public policy prescriptions they support. The thesis is supported by a lexical item frequency analysis of discussion related to genetically modified cotton in India which demonstrates that boundary work using social identity of farmers plays a significant role in shaping the discourse surrounding the adoption and governance of GM crops. (shrink)

The professional and institutional responsibility for handling genetic knowledge is well discussed; less attention has been paid to how lay people and particularly people who are affected by genetic diseases perceive and frame such responsibilities. In this exploratory study we qualitatively examine the attitudes of lay people, patients and relatives of patients in Germany and Israel towards genetic testing. These attitudes are further examined in the national context of Germany and Israel, which represent opposite regulatory approaches and (...) bioethical debates concerning genetic testing. Three major themes of responsibility emerged from the inter-group and cross-cultural comparison: self-responsibility, responsibility for kin, and responsibility of society towards its members. National contrast was apparent in the moral reasoning of lay respondents concerning, for example, the right not to know versus the duty to know (self-responsibility) and the moral conflict concerning informing kin versus the moral duty to inform (responsibility for kin). Attitudes of respondents affected by genetic diseases were, however, rather similar in both countries. We conclude by discussing how moral discourses of responsibility are embedded within cultural (national, religious) as well as phenomenological (being affected) narratives, and the role of public engagement in bioethical discourse. (shrink)

Population genomics seeks to better understand genomic diversity and variation at the level of populations. Numerous ethical questions are raised by large studies of human genomic diversity. First, at the level of ethical means, the confidentiality of the genetic data obtained and its handing are challenging. Second, at the more fundamental level of ethical goals or ends, we find questions concerning the meaning and the interpretation of genetic knowledge. What shall we do with this knowledge? Who will decide (...) research orientation and priorities? Ethical questions raised by population genomics imply those of “classical genomics,” but they have the additional ethical complexity of research done on populations. How should we take this particular aspect into account? (shrink)

ArgumentThis paper examines the intertwined relations between eugenics and medical genetics from a Swedish perspective in the 1940s and 1950s. The Swedish case shows that a rudimentary form of genetic counseling emerged within eugenic practices in the applications of the Swedish Sterilization Act of 1941, here analyzed from the phenomenon of “heredophobia” (ärftlighetsskräck). At the same time genetic counseling also existed outside eugenic practices, within the discipline of medical genetics. The paper argues that a demand for genetic (...) counseling increased in the 1940s and 1950s in response to a sense of reproductive responsibility engendered by earlier eugenic discourse. The paper also questions the claim made by theoreticians of biopolitics that biological citizens have emerged only during the last decades, especially in neoliberal societies. From the Swedish case it is possible to argue that this had already happened earlier in relation to the proliferation of various aspects of eugenics to the public. (shrink)

This paper provides a marketing ethics analysis that addresses the practice of selling genetic tests directly to the consumer. It details the complexity of this emergent sector by articulating the panoply of evolving ethical/social questions raised by this development. It advances the conversation about DTC genetic testing by reviewing the business and healthcare literature concerning this topic and by laying out the inherent ethical complications for consumers, marketers, and regulators. It also points to several possible public and company (...) policy adjustments. Because this area is relatively new and incredibly dynamic, its current discussion is necessarily an exercise in the “logic of discovery” rather than the “protocol of validation”. The paper serves as a primer for the types of GT being promoted. It also calls for a public discourse in the academic and general community to uncover and define the ethical guidelines and systemic adjustments necessary to create fairness in the various DTC transactions occurring between genetic test sellers and the buyers/clients of their services. (shrink)

In this paper I argue that the virtue ethics tradition can enhance the moral discourse on the ethics of prenatal genetic enhancements in distinctive and valuable ways. Virtue ethics prescribes we adopt a much more provisional stance on the issue of the moral permissibility of prenatal genetic enhancements. A stance that places great care on differentiating between the different stakes involved with developing different phenotypes in our children and the different possible means (environmental vs. genetic manipulation) (...) available to parents for pursuing legitimate concerns of parental love and virtue. Key components of the virtue ethics account of morality, such as the Aristotelian account of happiness, love and the doctrine of the mean, provide an adequate basis for rejecting the claim that it is morally impermissible for parents to pursue (safe and effective) prenatal enhancements. Furthermore, there is good reason to believe that a virtue ethics account of morality could actually support the stronger claim that utilising such interventions can (in certain contexts) be morally required. (shrink)

It is illegitimate to read any ontology about "race" off of biological theory or data. Indeed, the technical meaning of "genetic variation" is fluid, and there is no single theoretical agreed-upon criterion for defining and distinguishing populations (or groups or clusters) given a particular set of genetic variation data. Thus, by analyzing three formal senses of "genetic variation"—diversity, differentiation, and heterozygosity—we argue that the use of biological theory for making epistemic claims about "race" can only seem plausible (...) when it relies on the user’s own assumptions about race; the move from biological measures to claims about “race” inevitably amounts to a pernicious reification. We also excavate assumptions in the history of the technical discourse over the concept of "race" (e.g., Livingstone's and Dobzhansky's 1962 exchange, Edwards' 2003 response to Lewontin 1972, as well as contemporary discussions of cladistic "race", and "races" as clusters). We show that claims about the existence (or non-existence) of "race" are underdetermined by biological facts, methods, and theories. Biological theory does not force the concept of "race" upon us; our social discourse, social ontology, and social expectations do. We become prisoners of our abstractions at our own hands, and at our own expense. (shrink)

To understand public discourse in the United States on genetic causation of behavioral disorders, we analyzed media representations of genetic research on addiction published between 1990 and 2010. We conclude first that the media simplistically represent biological bases of addiction and willpower as being mutually exclusive: behaviors are either genetically determined, or they are a choice. Second, most articles provide only cursory or no treatment of the environmental contribution. A media focus on genetics directs attention away from (...) environmental factors. Rhetorically, media neglect the complexity underlying the etiology the addiction and direct focus back toward individual causation and responsibility. (shrink)

In this article we examine commodification and marketisation of genetic testing by companies offering direct-to-consumer genetic testing to the general public through online platforms in Hong Kong. Recently, offers of genetic testing have expanded from scientific and clinical genetic settings to general medicine and non-medical domains. The wider availability of tests, however, has raised concerns about the currently available scientifically proven utility of these tests. Using theme-oriented discourse analysis, we analyse the specific discursive modalities through (...) which the DTC companies in Hong Kong make inflated claims about the value of genetic tests to pursue their marketing agenda. We show that in this way the companies are selling ‘more’ than specific products to consumers: they are selling ‘hope’ and ‘increased autonomy’, that is, an opportunity to buy commodities online that promise consumers control of their health and wellbeing. (shrink)

The priorities of French policy regarding genetically modified (GM) food shifted in the late 1990s from aggressive promotion to strict regulation based on precaution and separation of GM food. This paradigmatic policy change coincided with a rapid shift in the dominant meanings of GM food in larger French public discourses. Using data from media coverage, organizational documents, and in-depth interviews, the study examines the relationship between policy developments and GM food’s symbolic transformation. I argue that the interpretive dimension interacted with (...) and co-evolved incrementally with formal policy developments, and that it cannot be understood as epiphenomenal to political processes, or as preceding and propelling a policy change. I identify three mechanisms of symbolic transformation: (1) multiplication of meanings; (2) association with other salient issues; and (3) coupling with national identity (boundary work). Conversely, this symbolic transformation influenced the terms of political debates and viable strategies, influencing policy developments. The study also demonstrates how certain longstanding elements of French political culture shaped, and were changed or reproduced through, these processes. (shrink)

Is genetic information different from other types of medical information and is therefore a special treatment required because of its special features? This question has been discussed since the mid-1990s under the label of genetic exceptionalism. This article discusses the essential arguments of the genetic exceptionalism discourse and analyzes their ethical reach. The primary question of this paper is whether the arguments of the current debate, with its predominantly scientific focus, are capable of solving the ethical (...) questions raised by genetic exceptionalism in such a way as to do justice to the normative scope and epistemological complexity. The author argues that the current genetic exceptionalism discourse is restrictive and offers little opportunity for exploring viable and ethically justifiable solutions regarding the implementation of genetic information in medical practice. Discourses on genetic exceptionalism should not only adhere to scientifically consistent criteria but also reflect individual perceptions and cultural values, enriched by adequate historical reflection. (shrink)

Although the idiom “genesis and structure” is usually associated with the rise of structuralism in the late 1950s and early 1960s, the two notions are arguably among the most persistent methods in the history of modern philosophy. This article outlines the emergence of “genetic epistemology” in the seventeenth century, when the seemingly antithetical character of the conceptual pair was reworked into a productive epistemological theory, especially in Descartes, Hobbes, Spinoza, and Leibniz, who increasingly used diachronic (genetic) narratives to (...) explain the synchronic (structural) features in their theories. Against Cassirer, I argue that it was Descartes rather than Hobbes who first presented structural issues genetically. In Descartes’ natural philosophy, his frequent claims that showing how a thing is produced reveals its true nature foreshadow precisely what Hobbes and Isaac Barrow later describe as causal definitions of geometric figures, in which the process of ideal generation by motion is what constitutes the very essence of a figure. I link this method to the historicizing discourse on origins in the Enlightenment and conclude by suggesting that there is a trace of Platonic idealism in genetic epistemology. (shrink)