Attempt of trans-disciplinary analysis of the evolutionary value of bioethics is realized. Currently, there are High Tech schemes for management and control of genetic, socio-cultural and mental evolution of Homo sapiens (NBIC, High Hume, etc.). The biological, socio-cultural and technological factors are included in the fabric of modern theories and technologies of social and political control and manipulation. However, the basic philosophical and ideological systems of modern civilization formed mainly in the 17–18 centuries and are experiencing ever-increasing and destabilizing (...) risk-taking pressure from the scientific theories and technological realities. The sequence of diagnostic signs of a new era once again split into technological and natural sciences’ from one hand, and humanitarian and anthropological sciences’, from other. The natural sciences series corresponds to a system of technological risks be solved using algorithms established safety procedures. The socio-humanitarian series presented anthropological risk. Global bioethics phenomenon is regarded as systemic socio-cultural adaptation for technology-driven human evolution. The conceptual model for meta-structure of stable evolutionary strategy of Homo sapiens (SESH) is proposes. In accordance to model, SESH composed of genetic, socio-cultural and techno-rationalist modules, and global bioethics as a tool to minimize existential evolutionary risk. An existence of objectively descriptive and value-teleological evolutionary trajectory parameters of humanity in the modern technological and civilizational context (1), and the genesis of global bioethics as a system social adaptation to ensure self-identity (2) are postulated. -/- . (shrink)

The co-evolutionary concept of tri-modal stable evolutionary strategy (SESH) of Homo sapiens is developed. The concept based on the principle of evolutionary complementarity of anthropogenesis: value of evolutionary risk and evolutionary path of human evolution are defined by descriptive (evolutionary efficiency) and creative-teleological (evolutionary correctness) parameters simultaneously, that cannot be instrumental reduced to others ones. Resulting volume of both parameters define the vectors of human evolution by two gear mechanism ˗ genetic and cultural co-evolution and techno-humanitarian balance. Explanatory model and (...) methodology of evaluation of creatively teleological evolutionary risk component of NBIC technological complex is proposed. The mechanism of influence of each module on the evolution of the two remaining modules of SESH a priori can be twofold: (1) informational co-evolution (direct selective pressure); (2) semantic co-evolution (time-varying semantic code, the compliance of the biological, socio- cultural and techno-rationalist adaptive modules of human stable evolutionary strategy). More rapidly evolving autonomous element of the co-evolutionary pair becomes making sense factor for the partner. Semantic co-evolution is the discrete acquisition of adaptive significance of individual alleles by changing socio-cultural types, manifested as an increase in the genetic variability of populations of Homo sapiens, and domesticated species parallel to socio-culturogenesis. The socio- cultural landscape leads to drastically difference of direction in biological evolution of Atlantic and East-Slavic ethnicities/civilizations. (shrink)

Scientific knowledge of how genes work is giving human beings unprecedented power to shape future human lives, for better or for worse. People involved in government, business and science are facing new questions related to the application of genetic technologies to human beings. Our technical knowledge is growing fast, but does our moral wisdom grow at the same rate?

The co-evolutionary concept of three-modal stable evolutionary strategy of Homo sapiens is developed. The concept based on the principle of evolutionary complementarity of anthropogenesis: value of evolutionary risk and evolutionary path of human evolution are defined by descriptive (evolutionary efficiency) and creative-teleological (evolutionary correctness) parameters simultaneously, that cannot be instrumental reduced to other ones. Resulting volume of both parameters define the vectors of biological, social, cultural and techno-rationalistic human evolution by two gear mechanism — genetic and cultural co-evolution and techno-humanitarian (...) balance. Explanatory model and methodology of evaluation of creatively teleological evolutionary risk component of NBIC technological complex is proposed. Integral part of the model is evolutionary semantics (time-varying semantic code, the compliance of the biological, socio-cultural and techno-rationalist adaptive modules of human stable evolutionary strategy). (shrink)

Interview by Klasien Horstman on gender and genetics. 'Unlike many gender theorists, I do not view the body as socially constructed; nor do I share postmodern and deconstructionist disquiet at the notion of a unified subject. Frankly, I think these constructions get in the way of political action and are bad for women’s rights.' -/- .

Like most bioethical discussion, examination of human biobanks has been largely framed in terms of research subjects’ rights, principally informed consent, with some gestures toward public benefits. However, informed consent is for the competent, rights-bearing individual: focussing on the individual, it thus neglects social, economic and even political matters; focussing on the competent rights-bearer, it does not serve situations where consent is plainly inappropriate (eg, the young child) or where coercion can obviously be justified (the criminal). Using the British experience (...) of large-scale biobanking, I argue that the focus on consenting individuals distorts our ways of thinking about biobanks and has serious practical ramifications. This becomes clear if we contrast the case of adult biobanks intended for medical research with two other forms of biobanking. Thus child cohort studies – vital for sound scientific investigation of the interplay of genetics and environment in health – have been very badly funded next to adult studies. On the other hand, forensic databases have attracted massive investment, but little debate – partly owing to a sense that here, at least, is a case where consent is not relevant. Contrasting these central types of biobanking, I will suggest that there are powerful factors at work in limiting ‘ethics’ to individual rights. Projects of this size should direct our attention to more overtly political questions concerning priority setting and organisation of medical research. (shrink)

-/- Policy regulations of ethically controversial genetic technologies should, on the one hand, be based on ethical principles. On the other hand, they should be socially acceptable to ensure implementation. In addition, they should align with ethical theory. Yet to date we lack a reliable and valid scale to measure the relevant ethical judgements in laypeople. We target this lacuna. -/- We developed a scale based on ethical principles to elicit lay judgments: the Genetic Technologies Questionnaire (GTQ). In two pilot (...) studies and a pre-registered main study, we validated the scale in a representative sample of the US population. -/- The final version of the scale contains 20 items but remains highly reliable even when reduced to five. It also predicts behaviour; for example, ethical judgments as measured by the GTQ predicted hypothetical donations and grocery shopping. In addition, the GTQ may be of interest to policymakers and ethicists because it reveals coherent and ethically justified judgments in laypeople. For instance, the GTQ indicates that ethical judgments are sensitive to possible benefits and harms (in line with utilitarian ethics), but also to ethical principles such as the value of consent-autonomy. -/- In conclusion, the GTQ can be recommended for research in both experimental psychology and applied ethics, as well as a tool for ethically and empirically informed policymaking. (shrink)

The cumulative impact of enhancement technologies may alter the human species in the very long-term future. In this article, I will start showing how radical genetic enhancements may accelerate the conversion into a novel species. I will also clarify the concepts of ‘biological species’, ‘transhuman’ and ‘posthuman’. Then, I will summarize some ethical arguments for creating a transhuman or posthuman species with a substantially higher level of well-being than the human one. In particular, I will present what I shall call (...) the Principle of the Best Interests of Posthumanity, which states that the enhancement of the human and transhuman species must be directed towards the creation of a posthuman existence that is substantially more valuable than its predecessors. I suggest that human extinction may be considered, within that principle, as one of the best interests of posthumanity. Finally, I will develop three objections that make that principle unattractive and that show that pursuing a full-blown programme of posthuman evolution is ethically flawed. (shrink)

A number of controversial topics related to bioethics and biotechnology 17 papers that deal with various aspects of release and development of genetically modified organisms (GMOs), stem cells and cloning, privacy and bio-banking.

The prospect of human genetic enhancement requires an institutional response, and probably the creation of new institutions. The governance of genetic enhancement technologies, moreover, needs to be global in scope. In this article, I analyze the debate on the global governance of human genetic enhancement. I begin by offering a philosophical justification for the need to adopt a global framework for governance of technologies that would facilitate the improvement of non-pathological genetic traits. I then summarize the main concrete proposals that (...) have recently emerged to govern genome editing at the global level. Finally, I develop some impediments that limit the impetus for global governance of genetic enhancement. (shrink)

In a recent publication Tom Douglas and Katrien Devolder have proposed a new account of genetic parenthood, building on the work of Heidi Mertes. Douglas and Devolder’s account aims to solve, among other things, the question of who are the genetic parents of an individual created through somatic cell nuclear transfer (i.e. cloning): (a) the nuclear DNA provider or (b) the progenitors of the nuclear DNA provider. Such a question cannot be answered by simply appealing to the folk account of (...) genetic parenthood, according to which the genetic parents of an individual are those individuals who produced the egg and sperm, respectively, which fused to create the embryo. It cannot be so as in cloning there is no fertilization as such. In this article I critically examine Douglas and Devolder’s new account of genetic parenthood and demonstrate that it is vulnerable to counterexamples that exploit the lack of a condition specifying that genetic parents should cause a child’s coming into existence. (shrink)

The utilitarian calculators of genetic therapy would do well to reflect again on Mills' liberal democratic rules of thumb: utility will generally be maximized when people are free to make choices, with good information, good instruments of collective action (democracy), and relative equality. My rule of thumb is that if we give future generations genetic choices, they will generally choose health, happiness, intelligence, and longevity, for themselves and their descendants.

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

This article provides a brief introduction to some contemporary challenges found in the intersection of bioethics and international criminal law involving genetic privacy, organ trafficking, genetic engineering, and cloning. These challenges push us to re-evaluate the question of whether the international criminal law should hold corporations criminally liable. I argue that a minimalist and Strawsonian conception of corporate responsibility could be useful for deterring the wrongs outlined in first few sections and in answering compelling objections to corporate criminal liability.

English-speaking research on morally right decisions in a healthcare context over the past three decades has been dominated by two major perspectives, namely, the Four Principles, of which the principle of respect for autonomy has been most salient, and the ethic of care, often presented as a rival to not only a focus on autonomy but also a reliance on principles more generally. In my contribution, I present a novel ethic applicable to bioethics, particularly as it concerns human procreation, (...) that I argue is a promising alternative to these two approaches. According to this new moral theory, an act is right just insofar as it treats people’s capacity to commune with respect, where communing is a matter of identifying with others and exhibiting solidarity with them. This ethic is inspired by relational ideals of communion and harmony from the African philosophical tradition, but is shown to be attractive to a broad, indeed global, audience, with regard to its implications for the morality of reproduction. (shrink)

This study takes off from the ethical problem that racism grounded in population genetics raises. It is an analysis of four standard scientific responses to the problem of genetically motivated racism, seen in connection with the Human Genome Diversity Project (HGDP): (1) Discriminatory uses of scientific facts and arguments are in principle ‘misuses’ of scientific data that the researcher cannot be further responsible for. (2) In a strict scientific sense, genomic facts ‘disclaim racism’, which means that an epistemically correct (...) grasp of genomics should be ethically justified. (3) Ethical difficulties are issues to be ‘resolved’ by an ethics institution or committee, which will guarantee the ethical quality of the research scrutinized. (4) Although population genetics occasionally may lead to racism, its overall ‘value’ for humankind justifies its cause as a desirable pursuit. I argue that these typical responses to genetically motivated racism supervene on a principle called the ‘ethic of knowledge’, which implies that an epistemically correct account has intrinsic ethical value. This principle, and its logically related ideas concerning the ethic of science, effectively avoids a deeper ethical question of responsibility in science from being raised. (shrink)

In The Future of Human Nature, Jürgen Habermas raises the question of whether the embryonic genetic diagnosis and genetic modification threatens the foundations of the species ethics that underlies current understandings of morality. While morality, in the normative sense, is based on moral interactions enabling communicative action, justification, and reciprocal respect, the reification involved in the new technologies may preclude individuals to uphold a sense of the undisposability of human life and the inviolability of human beings that is necessary for (...) their own identity as well as for reciprocal relations. Engaging with liberal bioethics and Catholic approaches to bioethics, the article clarifies how Habermas’ position offers a radical critique of liberal autonomy while maintaining its postmetaphysical stance. The essay argues that Habermas’ approach may guide the question of rights of future generations regarding germline gene editing. But it calls for a different turn in the conversation between philosophy and theology, namely one that emphasizes the necessary attention to rights violations and injustices as a common, postmetaphysical starting point for critical theory and critical theology alike. In 2001, Jürgen Habermas published a short book on questions of biomedicine that took many by surprise.[1] To some of his students, the turn to a substantive position invoking the need to comment on a species ethics rather than outlining a public moral framework was seen as the departure from the “path of deontological virtue,”[2] and at the same time a departure from postmetaphysical reason. Habermas’ motivation to address the developments in biomedicine had certainly been sparked by the intense debate in Germany, the European Union, and internationally on human cloning, pre-implantation genetic diagnosis, embryonic stem cell research, and human enhancement. He turned to a strand of critical theory that had been pushed to the background by the younger Frankfurt School in favor of cultural theory and social critique, even though it had been an important element of its initial working programs. The relationship of instrumental reason and critical theory, examined, among others, by Max Horkheimer, Theodor W. Adorno, and Herbert Marcuse and taken up in Habermas’ own Knowledge and Interest and Theory of Communicative Action became ever-more actual with the development of the life sciences, human genome analysis, and genetic engineering of human offspring. Today, some of the fictional scenarios discussed at the end of the last century as “science fiction” have become reality: in 2018, the first “germline gene-edited” children were born in China.[3] Furthermore, the UK’s permission to create so-called “three-parent” children may create a legal and political pathway to hereditary germline interventions summarized under the name of “gene editing.”In this article, I want to explore Habermas’ “substantial” argument in the hope that philosophy and theology become allies in their struggle against an ever-more reifying lifeworld, which may create a “moral void” that would, at least from today’s perspective, be “unbearable”, and for upholding the conditions of human dignity, freedom, and justice. I will contextualize Habermas’ concerns in the broader discourse of bioethics, because only by doing this, his concerns are rescued from some misinterpretations.[1] Jürgen Habermas, The Future of Human Nature.[2] Ibid., 125, fn. 58. 8[3] Up to the present, no scientific publication of the exact procedure exists, but it is known that the scientist, Jiankui He, circumvented the existing national regulatory framework and may have misled the prospective parents about existing alternatives and the unprecedented nature of his conduct. Yuanwu Ma, Lianfeng Zhang, and Chuan Qin, "The First Genetically Gene‐Edited Babies: It's “Irresponsible and Too Early”," Animal Models and Experimental Medicine ; Matthias Braun, Meacham, Darian, "The Trust Game: Crispr for Human Germline Editing Unsettles Scientists and Society," EMBO reports 20, no. 2. (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 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)

The guiding premise from which this special report begins is the conviction and hope that justice is at the normative heart of medicine and that it is the perpetual task of bioethics to bring concerns of justice to bear on medical practice. On such an account, justice is medicine's lifeblood, that by which it contributes to life as opposed to diminishing it. It is in this larger, historical, intersectional, critical, and ethically minded context that we must approach pressing questions (...) facing medicine, including the question of the import and role of genomic knowledge for human life. The second premise is that, at least in principle, the knowledge generated by genomics can be a gift or a weight, or both at the same time. That is to say that, on the one hand, genomic knowledge is a gift, creating novel insights into the genetic drivers of disease and into the geographical paths of our ancestors. And on the other hand, it is a weight, creating new obligations, new forms of social classification, and new forms of surveillance. Because it is in many ways the “common sense” of the day that genomic knowledge is a gift, this special report, which contains nine essays, concentrates on the ways in which such knowledge can be a weight, a weight that has the potential to thwart—and historically has thwarted—medicine from genuinely advancing justice . (shrink)

Genetic engineering technologies are a subclass of the biotechnology family, and are concerned with the use of laboratory-based technologies to intervene with a given organism at the genetic level, i.e., the level of its DNA. This class of technologies could feasibly be used to treat diseases and disabilities, create disease-resistant crops, or even be used to enhance humans to make them more resistant to certain environmental conditions. However, both therapeutic and enhancement applications of genetic engineering raise serious ethical concerns. This (...) paper examines various objections to genetic engineering (as applied to humans) which have been raised in the literature, and presents a new way to frame these issues, and to look for solutions. Specifically, this paper frames genetic engineering technologies within the ‘design turn in applied ethics’ lens and thus situates these technologies as covarying with societal forces. The value sensitive design (VSD) approach to technology design is then appropriated as the conceptual framework in which genetic engineering technologies can be considered so that they can be designed for important human values. By doing so, this paper brings further nuance to the scholarship on genetic engineering technologies by discussing the sociotechnicity of genetic engineering systems rather than framing them as value-neutral tools that either support or constrain values based on how they are used. (shrink)

According to what McMahan and Savulescu (2024) call the “popular position”, embryo selection is less ethically problematic than gene editing (other things being equal). The Two-Tier View, defended by McMahan and Savulescu, implies that the popular position is mistaken. The authors treat gene editing of embryos similarly to standard cases of medical treatments that promise expected benefits for the (subsequent) person even though gene editing also may create risks of harmful side effects for her. McMahan and Savulescu assume that if (...) gene editing is (successfully) done, it is better for the person who developed from the beneficently edited embryo. And, if the editing had not been done, although it was possible, that would have been worse for the same person in question. Thus, the comparator must always be a possible, even if unlikely, world in which she would have existed. That is why gene editing, in their view, resembles medical treatments. Therefore, assuming that standard medical treatments are not more ethically problematic than embryo selection, they conclude that (in general) gene editing should also be treated as not more problematic than embryo selection. In this paper, I am taking one step further than McMahan and Savulescu in questioning the central assumptions in the bioethical debates about new reproductive technologies. In the previous work, we argued that the very distinction between person-affecting and identity-affecting interventions is based on a questionable form of material-origin essentialism (Żuradzki and Dranseika 2022). Here, I argue that the bipartite distinction between person-affecting and impersonal reasons, as used by McMahan and Savulescu, insufficiently represents different possible counterfactual comparisons between real and merely possible outcomes. In particular, I argue that the evaluation of gene editing requires counterfactual comparisons to situations in which the benefited person might or might not exist. Such evaluation requires an additional class of reasons, let me call them “semi-person-affecting,” that cannot be reduced to either person-affecting or impersonal ones. This aspect of gene editing makes it dissimilar to standard cases of medical treatments. (shrink)

Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability, lack engagement with decades of empirical and theoretical scholarship spanning the social sciences and humanities in the multidisciplinary field of disability studies, and avoid serious consideration of the history of disability activism in shaping social, legal, political, and medical understandings of disability over the last (...) fifty years. For example, longstanding discussions on topics such as euthanasia, physician aid-in-dying, pre-implantation genetic diagnosis, prenatal testing, selective abortion, enhancement, patient autonomy, beneficence, non-maleficence, and health care rationing all tend to be premised on shared and implicit assumptions regarding disability, especially in relation to quality of life, yet with too little recognition of the way that “disability” is itself a topic of substantial research and scholarly disagreement across multiple fields. This is not merely a concern for academic and medical education; as an applied field tied to one of the largest economic sectors of most industrialized nations, bioethics has a direct impact on healthcare education, practice, policy, and, thereby, the health outcomes of existing and future populations. It is in light of these pressing issues that the Disability Bioethics Reader is the first reader to introduce students to core bioethical issues and concepts through the lens of critical disability studies and philosophy of disability. The Disability Bioethics Reader will include over thirty-five chapters covering key areas such as: critical histories and state-of-the-field analyses of modern medicine, bioethics, disability studies, and philosophy of medicine; methods in bioethics; concerns at the edge- and end-of-life; enhancement; disability, quality of life, and well-being; prenatal testing and abortion; invisible disabilities; chronic illness; healthcare justice; genetics and genomics; intellectual disability and neurodiversity; ethics and diagnosis; and epistemic injustice in healthcare. (shrink)

In my previous paper I argued that if in vitro fertilization (IVF) is legal and practiced there is no moral ground to object to legalization of preimplantation genetic diagnosis (PGD). My opponent raises an objection that my paper “fails to address the ethical argumentation of one key opponent of IVF – the Catholic Church”. In this reply I show that her/his thesis that embryos created during IVF are in ‘ethical limbo’ and “fall outside the moral universe of Christian ethics” does (...) not undermine my argumentation and masks the serious problem Catholics have with the moral status of early embryos. (shrink)

One interesting aspect of the Hwang-case has been the way in which this affair was assessed by academic journals such as Nature. Initially, Hwang’s success was regarded as evidence for the detrimental effects of research ethics, slowing down the pace of research in Western countries. Eventually, however, Hwang’s debacle was seen as evidence for the importance of ethics in the life sciences. Ironically, it was concluded that the West maintains its prominence in science (as a global endeavour) precisely because it (...) has its ethics in place. Bioethics was now seen as an indispensable part of quality control. In this article, I will claim that the Hwang case rather reveals that there is no reason for complacency and that there are substantial challenges awaiting us. They have to do with major transformations in the way knowledge is produced and research in the life sciences is conducted (such as the increase in pace and scale, globalisation and the growing importance of ICT and bioinformation). These transformations call for a different kind of bioethics. The focus must shift from duties of autonomous researchers concerning visible research subjects (“micro-ethics”) to responsibilities of institutionalised research networks in managing and processing large amounts of bioinformation (“macro-ethics”). Concepts such as transparency, reliability and benefit-sharing will become more important than concepts such as informed consent. Basically, it is a resurgence of the tension between the Kantian and the Hegelian view of ethics. The contours of macro-ethics will be elaborated notably as it is emerging in bioethical debates over biobanking and genetic databanks. (shrink)

: New genetic technologies continue to emerge that allow us to control the genetic endowment of future children. Increasingly the claim is made that it is morally "irresponsible" for parents to fail to use such technologies when they know their possible children are at risk for a serious genetic disorder. We believe such charges are often unwarranted. Our goal in this article is to offer a careful conceptual analysis of the language of irresponsibility in an effort to encourage more care (...) in its use. Two of our more important sub-claims are: A fair judgment of genetic irresponsibility necessarily requires a thick background description of the specific reproductive choice; and there is no necessary connection between an act's being morally wrong and its being irresponsible. These are distinct judgments requiring distinct justifications. (shrink)

Should we do whatever science lets us do? This short introduction in the 'All That Matters' series shows how developments in biotechnology, such as genetics, stem cell research and artificial reproduction, arouse both our greatest hopes and our greatest fears. Many people invest the new biotechnology with all the aspirations and faith once accorded to religious salvation. But does everyone benefit equally from scientific progress? This book argues that although we've entered new scientific territory, there is no need to (...) jettison our existing moral sense. By discussing a range of real-life cases, it equips readers to make up their own minds on these important questions. Good science and good ethics needn't be contradictory. (shrink)

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.

Internationally, there is considerable inconsistency in the recognition and regulation of children's genetic connections outside the family. In the context of gamete and embryo donation, challenges for regulation seem endless. In this paper, I review some of the paths that have been taken to manage children' being closely genetically related to people outside their families. I do so against the background of recognising the importance of children's interests as moral status holders. I look at recent qualitative research involving donor-conceived people (...) and borrow their own words to make sense of a purported interest to know (of) their close genetic ties. I also review ways in which gamete donation may have facilitated new kinds of kinship, which are at the same time genetic and chosen. In short, in this paper, I explore what meaning there could be in genetic connections that is not about parenthood. Further, I argue that the focus on parenthood in previous work in this area may be detrimental to appreciating some of the goods that can be derived from close genetic connections. (shrink)

This is the second edition of the textbook Bioethics in Canada. It is the most up to date bioethics textbook on the Canadian market. Twenty-nine of its 54 contributions are by Canadians. All the chapters carried over from the first edition are revised in full (especially the chapters on obligations to the global poor, on medical assistance in dying, and on public health). It comprises *new* chapters on emerging genetic technologies and on indigenous peoples' health. It contains *new* (...) case studies focusing on ethical issues and problems of relevance to Canadians. From the Preface: This anthology is designed for those teaching bioethics in colleges and universities in Canada. It comprises articles from researchers exploring the main problems of bioethics from a diversity of perspectives and ethical traditions. It includes in particular articles by Canadian researchers who appear in anthologies less often than they should. The hope is that the reader will, as a result, better appreciate the rich reservoir of talent present among those working in bioethics in Canada and Canadian bioethicists working abroad. In addition, this volume intentionally aims to educate the reader about the policies and laws regulating the most important and pressing bioethical problems facing Canadians. The hope is that the reader will develop a nuanced view of the nature, importance, and impact of bioethics in Canada. (shrink)

Modern genetics becomes a bridge between the natural sciences, humanities and social practtoon the social life of biomedicine and genetics this branch of science makes these branches of science by comparable in their socio-forming role to politics and economics factors. The research objective of this paper is theoretical analysis of social and cultural challenges posed by the development of basic genetics and genetic technologies. The problems of this book may be attributed to the new field of science, (...) formed at the intersection of genetics and sociology, which was called "social Genetics" (community genetics). In the field of philosophy and methodology of science, its goal is a comparative historical-scientific and philosophical and methodological analysis of general mechanisms of evolution of the dual socio-cultural and scientific paradigms. (shrink)

Merleau-Ponty claims that the idea of objective knowledge is supported by "our reveries." My aim in this paper is to explore this argument with respect to the idea of health. As a case study, I focus on bioethical issues surrounding return of results of incidental variants with respect to the use of genetic and genomic screening technologies (GSTs) in newborn and pediatric contexts. Drawing on a range of Merleau-Ponty’s texts, I argue that this case suggests the modern idea of health (...) to turn largely on the desire for control over one’s fate. More specifically, this is a desire for control aimed at assuring that the meaning of one’s life will stay the same as indexed by one’s ability expectations. I term this a desire for existential homeostasis. I further contend that the desire for existential homeostasis is underwritten by multiple sorts of privilege and, insofar as it informs health as a reverie, it is a desire that is particularly apt to contribute to and maintain injustice in both theory and practice. (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.

Precision medicine functions by grouping patients along genetic, molecular, and related ‘-omics’ factors. This stratification relies on large, growing databases of patient-volunteered information. Both private companies and government bodies incentivize patients to volunteer this genetic information appealing to the creation of collaborative patient partnerships and the concept of empowerment. This paper aims to address two related questions: (1) what is the actual nature of patient participation in precision medicine research? And (2) is this participation in precision medicine research really that (...) empowering for the average patient? I contend that firstly, the nature of this participation is best conceived of as merely contributory. Contributory participation, as it will be shown, falls short of collaboration. The partnership created by participation in precision medicine research is not one of sharing values, equal say in decisions, or shared benefit. Secondly, I contend that there are important caveats to claims that patient participation in precision medicine is empowering. Empowerment is hindered by the type of participation, the practical use or actionability of genetic data, genetic literacy, the cost of precision drugs for patients that qualify for them, and bioethical considerations of informed consent. (shrink)

In the contemporary biomedical literature, every disease is considered genetic. This extension of the concept of genetic disease is usually interpreted either in a trivial or genocentrist sense, but it is never taken seriously as the expression of a genetic theory of disease. However, a group of French researchers defend the idea of a genetic theory of infectious diseases. By identifying four common genetic mechanisms (Mendelian predisposition to multiple infections, Mendelian predisposition to one infection, and major gene and polygenic predispositions), (...) they attempt to unify infectious diseases from a genetic point of view. In this article, I analyze this explicit example of a genetic theory, which relies on mechanisms and is applied only to a specific category of diseases, what we call “a regional genetic theory.” I have three aims: to prove that a genetic theory of disease can be devoid of genocentrism, to consider the possibility of a genetic theory applied to every disease, and to introduce two hypotheses about the form that such a genetic theory could take by distinguishing between a genetic theory of diseases and a genetic theory of Disease. Finally, I suggest that network medicine could be an interesting framework for a genetic theory of Disease. (shrink)

This paper sets out to defend human genetic engineering with a new bioethical approach, post-humanism, combined with a radical democratic political framework. Arguments for the restriction of human genetic engineering, and specifically germ-line enhancement, are reviewed. Arguments are divided into those which are fundamental matters of faith, or "bio-Luddite" arguments, and those which can be addressed through public policy, or "gene-angst" arguments.The four bio-Luddite concerns addressed are: Medicine Makes People Sick; There are Sacred Limits of the Natural Order; Technologies Always (...) Serve Ruling Interests; The Genome is Too Complicated to Engineer. I argue that these are matters of faith that one either accepts or rejects, and that I reject.The non-fundamentalist or pragmatic concerns I discuss are: Fascist Applications; The Value of Genetic Diversity; The Geneticization of Life; Genetic Discrimination and Confidentiality; Systematically Bad Decisions by Parents; Discrimination Against the Disabled; Unequal Access; The Decline of Social Solidarity. I conclude that all these concerns can be adequately addressed through a proactive regulative framework administered by a liberal democratic state. Therefore, even germ-line genetic enhancement should eventually made available since the potential benefits greatly outweigh the potential risks. (shrink)

This book provides answers to the questions that biomedical and biotechnological research has posed to our societies by proposing the introduction of biorights. It shows how bioscience affects our individual and social lives by discussing and answering important questions such as; Are we becoming more vulnerable and unable to protect ourselves? How can we ensure fairness and justice with regards to the access to health care? Are human dignity, autonomy and equality at risk? Do we need new and special rights: (...) neurorights, genetic rights? What is the meaning and scope of the right to life, health, privacy or non-discrimination? Biorights are the suggested solution for dealing with these challenges. Healthcare professionals, bio-researchers, policy makers, scholars, and citizens will, in this book, find a guide to knowing how bioscience affects our lives. Furthermore, this book provides a comprehensive method for biomedical and biotechnological decision-making that comprises human or basic rights dimensions alongside technical and ethical dimensions. (shrink)

An influential argument in bioethics involves appeal to disgust, calling on us to take it seriously as a moral guide (e.g. Kass, Miller, Kahan). Some argue, for example, that genetic enhancement, especially via human reproductive cloning, is repellant or grotesque. While objectors have argued that repugnance is morally irrelevant (e.g. Nussbaum, Kelly), I argue that the problem is more fundamental: it is psychologically irrelevant. Examining recent empirical data suggests that disgust’s influence on moral judgment may be like fatigue: an (...) exogenous influence, yielding a “performance error” that does not reflect our understanding of moral matters. This conclusion also challenges appeals to repugnance on other topics (such as homosexuality) and generally downplays the importance of disgust in moral discourse. (shrink)

South African law currently forbids those seeking to arrange a surrogate motherhood agreement from creating a child that will not be genetically related to at least one of them. For a surrogacy contract to be legally valid, there must be a ‘genetic link’ between the child created through a surrogate and the parents who will raise it. Currently, this law is being challenged in the High Court of South Africa, and in this article I critically explore salient ethical facets of (...) the dispute. I argue that the law is unjust and should be revised. (shrink)

Editorial for latest issue introducing papers from a symposium held as part of the Irish President's Initiative on Bioethics and others questioning whether autonomy is losing its influence as a predominant principle in bioethics.

The case of Andrew Gobea, the first child to receive experimental gene therapy for SCID, and a reflection on the associated ethical implications of gene therapy research.

Recognizing the variety of dystopian science-fiction novels and movies, from Brave New World to Gattaca and more recently Star Trek, on the future of humanity in which eugenic policies are implemented, genetic engineering has been getting a bad reputation for valid but arguably, mostly historical reasons. In this paper, I critically examine the claim from Mehlman & Botkin (1998: ch. 6) that human enhancement will inevitably accentuate existing inequality in a free market and analyze whether prohibition is the optimal public (...) policy for this objection as egalitarians might advise (Lamont and Favor, 2014). (shrink)

Much work in contemporary bioethics defends a broadly liberal view of human reproduction. I shall take this view to comprise (but not to be exhausted by) the following four claims.1 First, it is permissible both to reproduce and not to reproduce, either by traditional means or by means of assisted reproductive techniques such as IVF and genetic screening. Second, it is permissible either to reproduce or to adopt or otherwise foster an existing child to which one is not biologically (...) related. Third, it is permissible either to bring into existence a child with the greatest chance of a life of maximum human flourishing or to bring into existence a child with a life worth living but with less than the greatest chance of a life of maximum human flourishing. Fourth, it is impermissible to bring into existence a child whose life is either certain or likely to fall below some baseline of a human life minimally worth living. (shrink)

Artificial gametes, derived from stem cells, have the potential to enable in vitro fertilization of embryos. Currently, artificial gametes are only being generated in laboratory animals; however, considerable efforts are underway to develop artificial gametes using human cell sources. These artificial gametes are being proposed as a means to address infertility through assisted reproductive technologies. Nonetheless, the availability of artificial gametes obtained from adult organisms can potentially expand the possibilities of reproduction. Various groups, such as same-sex couples, post-menopausal women, and (...) deceased donors, could potentially utilize artificial gametes to conceive genetically related offspring. The advent of artificial gametes raises significant bioethical questions. Should all these reproductive scenarios be accepted? How can we delineate the range of future reproductive choices? A normative bioethical framework may be necessary to establish a consensus regarding the use of human artificial gametes. This review aims to present the current state of research on the biological roadmap for generating artificial gametes, while also summarizing proposed approaches to establish a normative framework that delineates ethically acceptable paths for reproduction. (shrink)

Assisted reproductive technologies have greatly increased our control over reproductive choices, leading some bioethicists to argue that we face unprecedented moral obligations towards progeny. Several models attempting to balance the principle of procreative autonomy with these obligations have been proposed. The least demanding is the minimal threshold model (MTM), according to which every reproductive choice is permissible, except creating children whose lives will not be worth living. Hence, as long as the future child is likely to have a life worth (...) living, prospective parents may be allowed to use preimplantation genetic diagnosis (PGD) to select embryos with genetic diseases or disabilities. Assuming a consequentialist person‐affecting view of morality, this paper investigates whether the MTM is an appropriate tool to guide procreative decisions given the continuous development of reproductive genetic technologies. In particular, I consider germline genome editing (GGE) and I argue that its application in human reproduction, unlike PGD, should be conceived as person‐affecting towards future progeny. I claim that even if we assume the plausibility of the MTM within PGD, we are committed to accepting that a greater moral obligation towards progeny should guide procreative decisions if GGE were available. In this case, the MTM should no longer be considered an appropriate instrument to guide procreative choices. Finally, I investigate when we face this greater moral obligation, concluding that it applies only when prospective parents have already engaged in the in vitro fertilization process. (shrink)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to (...) the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome – its common nature – has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature of (...) the genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing. In order for public health officials to have the authority to develop genetics policies for the sake of the public good, the genome must have not only a common, but also a public, dimension. This article contends that DNA carries a public dimension through the use of two conceptual frameworks: the common heritage framework and the common resource framework. Both frameworks establish a public interest in the human genome, but the CH framework can be used to justify policies aimed at preserving and protecting the genome, while the CR framework can be employed to justify policies for utilizing the genome for the public benefit. A variety of possible policy implications are discussed, with special attention paid to the use of large-scale genomics databases for public health research. (shrink)

In this commentary paper, we are taking one step further in questioning the central assumptions in the bioethical debates about reproductive technologies. We argue that the very distinction between “person affecting” and “identity affecting” interventions is based on a questionable form of material-origin essentialism. Questioning of this form of essentialist approach to human identity allows treating genome editing and genetic selection as more similar than they are taken to be in the standard approaches. It would also challenge the idea that (...) normative reasons we have in these two types of cases markedly differ in strength. (shrink)

It seems certain that one day we will allow the genetic technology which will enhance our offspring. A highly effective new tool, called CRISPR, which allows for carving out genes, is already being used to edit the genomes of animals. In July 2017, the FDA legalized that germline drugs for therapeutic purposes could be sold in the market. It is a high time, now, that we need engage in discussions about the ethics of germline intervention. To contribute to the discussion (...) by showing our thought and to educate the public, we write this paper. (shrink)

Many people believe that the abortion debate will end when at some point in the future it will be possible for fetuses to develop outside the womb. Ectogenesis, as this technology is called, would make possible to reconcile pro-life and pro-choice positions. That is because it is commonly believed that there is no right to the death of the fetus if it can be detached alive and gestated in an artificial womb. Recently Eric Mathison and Jeremy Davis defended this position, (...) by arguing against three common arguments for a right to the death of the fetus. I claim that their arguments are mistaken. I argue that there is a right to the death of the fetus because gestating a fetus in an artificial womb when genetic parents refuse it violates their rights not to become a biological parent, their rights to genetic privacy and their property rights. The right to the death of the fetus, however, is not a woman's right but genetic parents’ collective right which only can be used together. (shrink)