Abstract.Since the gene splicing debates of the 1980s, the public has been exposed to an ongoing sequence of genetic and reproductive technologies. Many issue areas have outcomes that lose track of people's inner values or engender opposing religious viewpoints defying final resolution. This essay relocates the discussion of what is an acceptable application from the individual to the societal level, examining technologies that stand to address large numbers of people and thus call for policy resolution, rather than individual fiat, in (...) their application. A major source of guidance is the “Genetic Frontiers” series of professional dialogues and conferences held by the National Conference for Community and Justice from 2002 to 2004. Genetic testing, human gene therapy, genetic engineering of plants and animals, and stem cell technology are examined. While differences in perspective on the beginning of life persist, a stepwise approach to the examination of genetic testing reveals areas of general agreement. Stewardship of life, human co‐creativity with the divine, and social justice help define the bounds of application of genetic engineering and therapy; compassionate care plays a major role in establishing stem cell policy. Active, sustained dialogue is a useful resource for enabling sharing of religious values and crystallization of policies. (shrink)

Feminism offers three separate but equally important insights about human genetics and the new reproductive technologies. First, feminism is concerned with ways in which these new technologies have the potential to exploit women, particularly in the treatment of their reproductive tissue, while seeming to offer both sexes greater reproductive freedom. This risk has been largely ignored by much bioethics, which has concentrated on choice and autonomy at the expense of justice, giving it little to say about the concept of (...) exploitation. Second, feminist scholars have developed complex and subtle analyses of how women's labour is incorporated into the global bioeconomy in a gendered manner. Although feminist perspectives vary on such issues as surrogate motherhood, they have provided important studies of how women's labour is commodified in the new reproductive technologies. Finally, feminist analysts and activists have been among the leaders in identifying and resisting the threats from commodification and commercialisation in genetic research and patenting, which often affect women disproportionately. In all three areas, feminist writers have drawn specific attention to medical, economic and political impacts on women that had not been adequately considered. (shrink)

Many writers in bioethics, science, and medicine contend that embryo selection is a morally better way of avoiding genetic disorders then gene editing, as the latter has risks that the former does not. We argue that one reason to use gene editing is that in many cases it would be better for the person who would develop from the edited embryo, so that not to have done it would have been worse for that person. By contrast, embryo selection is never (...) better for the person who develops from the selected embryo. This reason to use gene editing has, however, been challenged on two grounds: first, that it makes no difference, morally, whether a bad effect is worse for someone, or a good effect better for someone; and, second, that beneficent gene editing would not be unequivocally better for the person who would develop from the edited embryo. We argue that both of these objections can be satisfactorily answered and thus that there is indeed a significant moral reason, at least in some cases, to use gene editing rather than embryo selection. (shrink)

The development of human genetics raises a wide range of important ethical questions for us all. The interpersonal dimension of genetic information in particular means that genetics also poses important challenges to the idea of patient-centredness and autonomy in medicine. How ought practical ethical decisions about the new genetics be made given that we appear, moreover, no longer to be able to appeal to unquestioned traditions and widely shared communitarian values? This paper argues that any coherent ethical (...) approach to these questions must be able both to uphold the moral status of the individual and at the same time recognise the communitarian, interpersonal dimensions both of the world in which we live and of personal autonomy itself. The paper then goes on to propose an approach to the resolution of the ethical questions raised by the use of the new genetics in reproductive choice through the development of a coherent and principled process of public reason and justification oriented towards the support and development of personal autonomy. (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 overarching aim of this book is to illuminate a broad array of issues connected with reproduction and ethics through the lens of moral philosophy. With novel frameworks for understanding prenatal moral status and human identity, DeGrazia sheds new light on the ethics of abortion and embryo research, genetic enhancement and prenatal genetic interventions, procreation and parenting, and decisions that affect the quality of life of future generations.

Book reviewed in this article: Reproductive Genetics and the Law. By Sherman Elias and George J. Annas.

Imagine a genetic counselor working with a young couple pregnant with their first child. The explosion of genetic knowledge and technology in recent years is complicating this professional relationship as a host of new choices brings a few clients with atypical needs. This couple is deaf. They seek not to avoid a child with their disability but rather to assure that the child too will be deaf—a child to share their culture and perspectives on the world. If prenatal diagnosis indicates (...) that the prospective child would be hearing, they intend to terminate the pregnancy and try again. So, how should the counselor respond to this request for services? Does a traditional deference to parental autonomy in reproductive matters require that we respect such decisions by informed couples? More broadly, what are the concepts by which society will guide policy in this new and sensitive domain? (shrink)

Recent ethical and legal challenges have arisen concerning the rights of individuals over their IVF embryos, leading to questions about how, when the wishes of parents regarding their embryos conflict, such situations ought to be resolved. A notion commonly invoked in relation to frozen embryo disputes is that of reproductive rights: a right to have (or not to have) children. This has sometimes been interpreted to mean a right to have, or not to have, one's own genetic children. But can (...) such rights legitimately be asserted to give rise to claims over embryos? We examine the question of property in genetic material as applied to gametes and embryos, and whether rights over genetic information extend to grant control over IVF embryos. In particular we consider the purported right not to have one's own genetically related children from a property-based perspective. We argue that even if we concede that such (property) rights do exist, those rights become limited in scope and application upon engaging in reproduction. We want to show that once an IVF embryo is created for the purpose of reproduction, any right not to have genetically-related children that may be based in property rights over genetic information is ceded. There is thus no right to prevent one's IVF embryos from being brought to birth on the basis of a right to avoid having one's own genetic children. Although there may be reproductive rights over gametes and embryos, these are not grounded in genetic information. (shrink)

The disability critique of negative genetic selection is frequently accused of threatening reproductive liberty. This paper describes the disability critique and defends it against that objection. It also contends that the critique can work to deflate belief in genetic determinism. Recognizing the influence of genetic determinism helps advocate for existing persons in the disability community and protects reproductive liberty. The disability critique can point to genetic determinism but does not suggest a ban or obstacles to the choice of negative genetic (...) selection; therefore, it is not antithetical to reproductive liberty, as has been charged. (shrink)

In this paper I argue that the account of deliberative democracy advanced by Amy Gutmann and Dennis Thompson (1996, 2004) is a useful normative theory that can help enhance our deliberations about public policy in morally pluralistic societies. More specifically, I illustrate how the prescriptions of deliberative democracy can be applied to the issue of regulating non-medical uses of pre-implantation genetic diagnosis (PGD), such as gender selection. Deliberative democracy does not aim to win a philosophical debate among rival first-order theories, (...) such as libertarianism, egalitarianism or feminism. Rather, it advances a second-order analysis that strives to help us determine what would constitute a reasonable balance between the conflicting fundamental values that arise in the context of regulating PGD. I outline a theoretical model (called the Reasonable Genetic Intervention Model) that brings these issues to the fore. Such a model incorporates the concern for both procedural and substantive principles; and it does so in way that takes provisionality seriously. (shrink)

Noninvasive prenatal testing promises to enhance women's reproductive autonomy by providing genetic information about the fetus, especially in the detection of genetic impairments like Down syndrome. In practice, however, NIPT provides opportunities for intensified manipulation and control over women's reproductive decisions. Applying Miranda Fricker's concept of epistemic injustice to prenatal screening, this article analyzes how medical professionals impair reproductive decision-making by perpetuating testimonial injustice. They do so by discrediting positive parental testimony about what it is like to raise a child (...) with DS. We argue that this testimonial injustice constitutes a twofold harm: people with DS and their family members who claim that parenting a child with DS may be a rewarding and joyous experience are harmed when they are systematically silenced, disbelieved, and/or denied epistemic credibility by medical professionals, and pregnant women are harmed since they might make poorly informed choices without access to all relevant information. The broader implication of the analysis is that epistemic justice is a precondition of reproductive autonomy. We conclude by calling for federal oversight of the acquisition and dissemination of information that prospective parents receive following a positive diagnosis of DS to ensure that it is comprehensive and up to date. (shrink)

It has been argued by some authors that our reaction to deaf parents who choose deafness for their children ought to be compassion, not condemnation. Although I agree with the reasoning proposed I suggest that this practice could be regarded as unethical. In this article, I shall use the term “dysgenic” as a culturally imposed genetic selection not to achieve any improvement of the human person but to select genetic traits that are commonly accepted as a disabling condition by the (...) majority of the social matrix; in short as a handicap. As in eugenics, dysgenics can be achieved in a positive and a negative way. Positive dysgenics intends to increase the overall number of people with a particular genetic trait. Marriage between deaf people or conceiving deaf children through reproductive technology are examples of positive dysgenics. Negative dysgenics can be obtained through careful prenatal or pre-implantation selection and abortion (or discarding) of normal embryos and foetuses. Only deaf children would be allowed to live. If dysgenics is seen as a programmed genetic intervention that undesirably shapes the human condition – like deliberately creating deaf or dwarf people – the professionals involved in reproductive technologies should answer the question if this should be an accepted ethical practice because the basic human right to an open future is violated. (shrink)

People are worried that advances in genetics will lead to a revival of eugenics. Such worries are often associated with eugenic practices carried out early in the 20th century---the forcible sterilization of feebleminded persons in the United States and the Nazi program of Racial Hygiene. A "new eugenics" involving prenatal genetic testing and the selective abortion of fetuses diagnosed with severe genetic disorders might, nonetheless, be acceptable. In chapter one I examine the history of eugenics and discuss what might (...) make a new eugenics more tolerable. ;Chapters two and three discuss reproductive decision making by individuals . Chapter 2 investigates the morality of abortion. I conclude that the moral status of the fetus is ultimately uncertain. In exceptional circumstances, such as the case where a fetus would develop into a severely disabled infant, there are good reasons for thinking that abortion is morally permissible. It is plausible, for example, that the value of a fetal life is a function of its future quality of life. ;In chapter three I discuss what quality of life consists in. I develop a pluralistic perspective according to which quality of life is a function of multiple independent components. When deciding to bring a child into existence parents should consider the quality of life expected for the child and also take into account the likely impact on their own lives, the lives of other family members, and society as a whole. ;Chapter four asks whether or not governmental restrictions should be placed on the kinds of genetic interventions which will be permitted. A worry is that interventions aimed at enhancement would only be available to the financially fortunate and thus promote unjust social inequalities. Another worry is that the development and use of such interventions would drain medical resources away from more fruitful purposes and thus have a negative impact on aggregate utility. The social aim to promote liberty, on the other hand, speaks against the imposition of restrictions. Faced with conflicting social values, we need to think more about how to make trade-offs between liberty, equality, and aggregate utility. (shrink)

In this revised edition with a new preface from the editor, leading scientists explain the nature and goals of `test tube' reproduction and genetic engineering, and their eugenic implications. In contrast to the Warnock report, the extended commentary considers the issues in the context of a social ethic rather than the individualist viewpoint.

At times decisions are made in the field of genetics that are presented as if the ethical debates have been adequately treated and so all moral considerations have been addressed, when the truth is very different. Nor is it always easy or desirable to separate the ethical, legal and social questions posed by new developments. The impact of developments in genetic science upon communities is one field of enquiry that envelops each of these areas.This paper explores the impact of (...) genetics upon communities through focusing, in particular, upon certain developments in reproductive science. After introducing core issues and technologies, it discusses particular ethical concerns in relation to the ‘shadow’ of eugenics over such developments, before exploring the role of legislative debates and procedures in transforming social attitudes, values and hence norms. It then turns to consider debates concerning the ‘quality of life ethic’ now prevalent in healthcare, and moves on to discuss the issue of genetic discrimination – focusing, in particular, upon discrimination against disabled persons as a representative instance of the actual ethical and social/communitarian implications of the foregoing. It ends by highlighting the need to discern the ways in which the ethics of genetics is presently shaped and practised in order to discern better the particular social and communitarian implications of certain technological advances. (shrink)

With over 10 000 bases of DNA being sequenced around the world per minute, it is vital that ethical discussion continues to keep pace with genetic research. This contribution by four top theorists in bioethics carefully considers the implications of the many ways genetic information will influence human health and reproduction, by considering “the most basic moral principles that would guide public policy and individual choice concerning the use of genetic interventions in a just and humane society” (4–5). Proceeding (...) with the themes of rights, justice, and harm, problems addressed by the authors include: the significance of the moral difference between treating genetic disease and altering personality characteristics; whether the utilisation of prenatal interventions to avoid disability discriminates against the disabled, and who should have control …. (shrink)

In this paper I will discuss three areas in which advances in human reproductive technology could occur, their uses and abuses, and their effects on society. First is the potential to drastically increase the success rate and availability of in vitro fertilization and embryo freezing. Second is the ability to perform biopsies on embryos prior to the onset of pregnancy. Finally, I will consider the adding or altering of genes in embryos, commonly referred to as genetic engineering.As new reproductive technologies (...) pass from experimental models into the potential for medical utilization, I believe that it will be important for lawmakers everywhere to avoid the impulse to outlaw procedures that a society believes to be unnatural at a first glance. Rather, I would hope that they can respond thoughtfully with legislation that serves two purposes — to protect the rights of couples to overcome infertility or to reduce the risk of genetic disease in their children-to-be, and more importantly, to protect children-to-be from the abuses that could result from some of the practices that I will discuss. (shrink)

The past few years has seen a resurgence in the public interest in space flight and travel. Spurred mainly by the likes of technology billionaires like Elon Musk and Jeff Bezos, the topic poses both unique scientific as well as ethical challenges. This paper looks at the concept of generation ships, conceptual behemoth ships whose goal is to bring a group of human settlers to distant exoplanets. These ships are designed to host multiple generations of people who will be born, (...) live, and die on these ships long before it reaches its destination. This paper takes reproductive ethics as its lens to look at how genetic enhancement interventions can and should be used not only to ensure that future generations of offspring on the ships, and eventual exoplanet colonies, live a minimally good life but that their births are contingent on them living genuinely good and fulfilling lives. The paper makes the further claim that if such a thesis holds, it also does so for human enhancement on Earth. (shrink)

Since the introduction of mathematical population genetics, its machinery has shaped our fundamental understanding of natural selection. Selection is taken to occur when differential fitnesses produce differential rates of reproductive success, where fitnesses are understood as parameters in a population genetics model. To understand selection is to understand what these parameter values measure and how differences in them lead to frequency changes. I argue that this traditional view is mistaken. The descriptions of natural selection rendered by population (...) class='Hi'>genetics models are in general neither predictive nor explanatory and introduce avoidable conceptual confusions. I conclude that a correct understanding of natural selection requires explicitly causal models of reproductive success. *Received May 2006; revised December 2006. †To contact the author, please write to: Department of Philosophy, Kansas State University, 201 Dickens Hall, Manhattan, KS 66506; e‐mail: glymour@ksu.edu . (shrink)

-/- It is commonly believed that the etiology of autism is at least partly explained through genetics. Given the complexity of autism and the variability of the autistic phenotype, genetic research and counseling in this field are also complex and associated with specific ethical questions. Although the ethics of autism genetics, especially with regard to reproductive choices, has been widely discussed on the public fora, an in depth philosophical or bioethical reflection on all aspects of the theme seems (...) to be missing. With this literature review we wanted to map the basic questions and answers that exist in the bioethical literature on autism genetics, research, counseling and reproduction, and provide suggestions as to how the discussion can proceed. We found 19 papers that fitted the description of “bioethics literature focusing on autism genetics,” and analyzed their content to distill arguments and themes. We concluded that because of the complexity of autism, and the uncertainty with regard to its status, more ethical reflection is needed before definite conclusions and recommendations can be drawn. Moreover, there is a dearth of bioethical empirical studies querying the opinions of all parties, including people with autism themselves. Such empirical bioethical studies should be urgently done before bioethical conclusions regarding the aims and desirability of research into autism genes can be done. Also, fundamental philosophical reflection on concepts of disease should accompany research into the etiology of autism. © 2016 Wiley Periodicals, Inc. (shrink)

ABSTRACT Many people now believe that human reproductive cloning – once sufficiently safe and effective – should be permitted on the grounds that it will allow the otherwise infertile to have children that are biologically closely related to them. However, though it is widely believed that the possession of a close genetic link to our children is morally significant and valuable, we argue that such a view is erroneous. Moreover, the claim that the genetic link is valuable is pernicious; it (...) tends to give rise to highly undesirable consequences, and therefore should be combated rather than pandered to. The emphasis on the genetic is unwarranted and unfortunate; rather than giving us moral reason to support reproductive cloning in the case of infertility, the fact that cloning requests are likely to be motivated by the genetic argument gives us reason to oppose its availability. (shrink)

Background. Since the nineties, policymakers and theorists working across several disciplines started to entertain the notion of directly engaging the public in matters of public concern. Accompanying this was the attempt to resort to deliberative democracy in order to make such an involvement effective. Seizing on its intrinsic dialogic nature, some scholars proposed the application of public deliberation to the realm of public bioethics. Drawing upon the theory and practice of deliberative public bioethics, the purpose of this paper is to (...) shed light onto the figure of the bioethical expert and its role in public bioethics, and relatedly, to investigate how deliberation may be implemented in a public bioethics context. Methods. We set up a large-scale experiment to investigate whether, and to what extent, different moderation styles impact on participants’ moral preferences. The study combines a survey of a representative sample of the general population with a laboratory experiment based on a random sample of students that ex-ante has identical attitudes to the general population.Results. Findings show that: i) different moderation styles can significantly influence deliberative outcomes; iii) the effects of deliberation are not necessarily immediate, but may be revealed after the end of deliberative session; iii) participants tend to better appreciate a bioethical expert acting as “passive moderator”, namely as someone who acts in order to ensure non-domination and non-interference, thus allowing the creation of basic conditions for equality within the deliberative setting.Conclusions. Our experiment represents an example of how deliberation can be employed in public bioethics. (shrink)

The extent to which society utilises the law to enforce its moral judgments remains a dominant issue in this era of embryonic stem cell research, preimplantation genetic diagnosis, and human reproductive cloning. Balancing the potential health benefits and diverse moral values of society can be a tremendous challenge. In this context, governments often adopt legislative bans and prohibitions and rely on the inflexible and often inappropriate tool of criminal law. Legal prohibitions in the field of reproductive genetics are not (...) likely to reflect adequately the depth and diversity of competing stakeholder positions. Rather, a comprehensive and readily responsive regulatory policy is required. Such a policy must attend to the evolving scientific developments and ethical considerations. We outline a proposal for effective, responsive, and coherent oversight of new reproductive genetic technologies. (shrink)

In Evans, both the U.K. High Court and Court of Appeal upheld Howard Johnston’s right to refuse Natallie Evans access to the stored embryos which represented her only hope of having a child which was genetically her own. In this note, I focus on claims of gender (in)equality in the resolution of Evans. My argument is that such claims are often made all too easily, without full consideration of the problems of advancing them in the context of procreative decision-making, where (...) men and women are inevitably differently situated. I conclude that although equality arguments are not wholly without value in this context, they need be used with extreme care. And, with due caution, I set out an equality argument of my own which was not made in Evans. (shrink)

ABSTRACT Many people now believe that human reproductive cloning – once sufficiently safe and effective – should be permitted on the grounds that it will allow the otherwise infertile to have children that are biologically closely related to them. However, though it is widely believed that the possession of a close genetic link to our children is morally significant and valuable, we argue that such a view is erroneous. Moreover, the claim that the genetic link is valuable is pernicious; it (...) tends to give rise to highly undesirable consequences, and therefore should be combated rather than pandered to. The emphasis on the genetic is unwarranted and unfortunate; rather than giving us moral reason to support reproductive cloning in the case of infertility, the fact that cloning requests are likely to be motivated by the genetic argument gives us reason to oppose its availability. (shrink)

This book brings together an international collection of experts in reproductive ethics, law, disability studies, and medicine to explore the challenging future of reproduction and children. From the medical to the social and from the financial to the legal, the authors explore the expanding impact of reproductive genetics on our society. New advances in genetic technologies are revolutionizing the practice of reproductive medicine. We have expanded our ability to detect genetic changes in embryos and fetuses in ways that (...) potentially allow to identify, treat, or prevent a growing range of diseases. The development of gene-editing technologies raises questions about the possibility of removing disease-causing variants from embryos before pregnancy implantation. The growing sophistication of prenatal genomic sequencing offers us glimpses into the whole genome of the developing fetus. And, the increasingly sophisticated science of 'gene matching' allows us greater and greater foreknowledge of how the genomes of two individuals will combine in a future child. This is an indispensable book on the newest developments in bioethics caused by the sciences. Chapter 5 is available open access under a Creative Commons Attribution 4.0 International License via link.springer.com. (shrink)

This article considers John Harris’ work on autonomy, specifically reproductive autonomy, outlined in The Value of Life and developed throughout his career. Harris often used the concept of reproductive autonomy to make the case for liberal approaches to developments in reproductive and genetic technologies. Harris argued that reproductive autonomy should be highly valued, and therefore we need compelling arguments to justify limiting it in anyway. When discussing reproductive autonomy, Harris focused mainly on restrictions on the potential users of reproductive technologies (...) autonomy, that is, prospective parents. This article extends the discussion of autonomy and the appropriate limits to individuals exercising their autonomy to medical professionals working in this area. Given reproductive technologies have become part of routine medical practice, this article considers whether the current restrictions on both patients and clinicians, as imposed by regulators and professional guidelines, remain ethically justified. (shrink)

The validity of Husserl’s early apprehension/content of apprehension schema (_Auffassung/Auffassungsinhalt Schema_) of intentionality has long been a subject of dispute. In the case of phantasy (_Phantasie_), commentators often assert that the talk of “non-intentional content,” i.e. the phantasm, is abandoned in Husserl’s mature phenomenology of phantasy, and his subsequent theory of reproductive consciousness aims precisely to replace the previous schema. Against the current dismissive stance in the literature, this paper argues for the centrality of the concept of phantasm in the (...) phenomenology of phantasy. This is achieved in three steps. First, I argue for a functional interpretation of the schema, which maintains that it is not an empirical-genetic account of how non-intentional “sense-data” is transformed into presentations of intentional objects, but a structural exposition of the essential moments of objectifying consciousness. Second, I revisit Husserl’s theory of reproductive consciousness, arguing that in reproduction, what is reproduced is not only the noetic experience but also the hyletic substrate. Hence, the theory of reproductive consciousness, far from calling for an abandonment of the concept of phantasm, instead clarifies this concept and its function in phantasy. To fortify the point that the phantasm is crucial for the phenomenology of phantasy, I examine two features of phantasy, namely the perspectivalness of phantasized objects and the experience of my phantasy Ego being the “zero point of orientation” in phantasy, arguing that these two essential features can only be accounted for by appealing to the concept of phantasm. (shrink)

With over 10 000 bases of DNA being sequenced around the world per minute, it is vital that ethical discussion continues to keep pace with genetic research. This contribution by four top theorists in bioethics carefully considers the implications of the many ways genetic information will influence human health and reproduction, by considering “the most basic moral principles that would guide public policy and individual choice concerning the use of genetic interventions in a just and humane society” (4–5). Proceeding (...) with the themes of rights, justice, and harm, problems addressed by the authors include: the significance of the moral difference between treating genetic disease and altering personality characteristics; whether the utilisation of prenatal interventions to avoid disability discriminates against the disabled, and who should have control …. (shrink)

In vitro gametogenesis (IVG) is believed to be the next big breakthrough in reproductive medicine. The prima facie acceptance of this possible future technology is notable when compared to the general prohibition on human reproductive cloning. After all, if safety is the main reason for not allowing reproductive cloning, one might expect a similar conclusion for the reproductive application of IVG, since both technologies hold considerable and comparable risks. However, safety concerns may be overcome, and are presumably not the sole (...) reason why cloning is being condemned. We therefore assess the non‐safety arguments against reproductive cloning, yet most of these can also be held against IVG. The few arguments that cannot be used against IVG are defective. We conclude from this that it will be hard to defend a ban on reproductive cloning while accepting the reproductive use of IVG. (shrink)

Some authors have argued that the human use of reproductive cloning and genetic engineering should be prohibited because these biotechnologies would undermine the autonomy of the resulting child. In this paper, two versions of this view are discussed. According to the first version, the autonomy of cloned and genetically engineered people would be undermined because knowledge of the method by which these people have been conceived would make them unable to assume full responsibility for their actions. According to the second (...) version, these biotechnologies would undermine autonomy by violating these people’s right to an open future. There is no evidence to show that people conceived through cloning and genetic engineering would inevitably or even in general be unable to assume responsibility for their actions; there is also no evidence for the claim that cloning and genetic engineering would inevitably or even in general rob the child of the possibility to choose from a sufficiently large array of life plans. (shrink)

In the engaging and thought-provoking book The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids and the Kids We Have, Bonnie Rochman addresses the question of choice in human reproduction through the lens of knowledge. Asserting that the desire for knowledge is the central theme of modern-day reproduction, she asks, “Is genetic knowledge empowering or fear-inducing or both?” Yet the question at the heart of the book goes beyond knowledge. Rochman delves into whether genetic (...) information is actionable and then examines the corollary question of whether individuals should make decisions based on this data. Do parents want to choose the kinds of kids they have? Certainly, most parents would do what they could to prevent their child from having a painful, life-limiting disease. But that is the extreme. And while genetic technologies generally start by targeting the extreme, the inevitable byproduct is the ability to know about and affect the fringe. It is at the borders that the critical questions lie. Taking advantage of reproductive choices has potentially life-altering and permanent consequences not only for the chooser but also for the resulting child, the family unit, and society. (shrink)

BackgroundGenetics and genomics research (GGR) is increasingly being conducted around the world; yet, researchers and research oversight entities in many countries have struggled with ethical challenges. A range of ethics and regulatory issues need to be addressed through comprehensive policy frameworks that integrate with local environments. While important efforts have been made to enhance understanding and awareness of ethical dimensions of GGR in Africa, including through the H3Africa initiative, there remains a need for in-depth policy review, at a country-level, to (...) inform and stimulate local policy development and revision on the continent.MethodsTo identify and characterize existing ethics-related guidelines and laws applicable to GGR across much of Africa, we conducted a scoping review of English language policy documents identified through databases, repositories, and web searches. Thirty-six documents were included and coded using a framework that contained a range of themes across five analytical categories: (1) respect, (2) beneficence, (3) justice, (4) independent oversight, and (5) bans and prohibitions. Data analysis software (NVivo 12) was used to organize, code, and tabulate information according to document characteristics and topics. Illustrative examples of policy requirements were selected for inclusion.ResultsDocuments that met inclusion criteria spanned 20 years; published between 1996 and 2018, with the majority (58%) published after 2009. About two-thirds were denoted as “guidelines,” and slightly more than half were non-exclusive to GGR. Very few (six) country-level documents identified were specific to GGR. Requirements related to the principle of “respect” appeared most often across all documents, relative to other principles and processes. The most commonly stated ban was on reproductive cloning. Other prohibitions applied to germline editing, undue inducements in research, sample use for commercial purposes, employee mandatory DNA testing, fetal sex selection, stem cell use, eugenics, and research without public health benefits.ConclusionsEnforceable policies that are indispensable to the ethical conduct and review of GGR are either deficient or missing in many African countries. Existing international, GGR-specific ethics guidelines can be used to inform GGR policy development at a country-level, in conjunction with insight from country specific ethics committees and other local stakeholders. (shrink)

The prelims comprise: Why Is Reproductive Choice Important? Is There a Right to Reproduce? Is There a Duty to Reproduce? Are There Duties Not to Reproduce? Responsibilities in Reproductive Decisions Are There Rights to Rear Children? Conclusions References.

The genetic diversity argument (GDA) is one of the most commonly voiced objections to advances in reproductive and genetic technologies. According to the argument, scientific and technological developments in the realm of genetics and human reproduction will lead to lower genetic diversity, which will threaten the health and survivability of the human population. This discussion explicates and analyzes the GDA and challenges its empirical assumptions. It also discusses the possible significance of the GDA in our overall thinking about (...) genetics and human reproduction and examines two proposals for preserving "useful" genes. (shrink)

Concern for “reproductive liberty” suggests that decisions about embryos should normally be made by the persons who would be the genetic parents of the child that would be brought into existence if the embryo were brought to term. Therapeutic cloning would involve creating and destroying an embryo, which, if brought to term, would be the offspring of the genetic parents of the person undergoing therapy. I argue that central arguments in debates about parenthood and genetics therefore suggest that therapeutic (...) cloning would be prima facie unethical unless it occurred with the consent of the parents of the person being cloned. Alternatively, if therapeutic cloning is thought to be legitimate, this undermines the case for some uses of reproductive cloning by implying that the genetic relation it establishes between clones and DNA donors does not carry the same moral weight as it does in cases of normal reproduction. (shrink)

abstract John Robertson has famously argued that the right to reproductive autonomy is exceedingly broad in scope. That is, as long as a particular reproductive preference such as having a deaf child is “determinative” of the decision to reproduce then such preferences fall under the protective rubric of reproductive autonomy rights. Importantly, the deafness in question does not constitute a harm to the child thereby wrought since unless the child could be born deaf he or she would otherwise never have (...) existed— his or her prospective parents would simply have chosen to abort. As such, for this child, being born deaf counts as a benefit, albeit of the “backhanded” variety, since the only other practical alternative is nonexistence. In what follows, I want to investigate this argument in detail. The target of my investigation will be the possible future use of gene therapy technology to “disenhance” one's offspring. I intend to show that the apparently unlimited right to reproductive autonomy, that is, the right to choose both the quantity and qualities of future offspring, entailed by the argument from backhanded benefit can in fact be “sidestepped” through considering what sorts of reproductive practices we as a society ought to allow. (shrink)

Research protocols must have a reasonable balance of risks and anticipated benefits to be ethically and legally acceptable. This article explores three characteristics of research on reproductive genetic technologies that complicate the assessment of the risk-benefit ratio for such research. First, a number of different people may be affected by a research protocol, raising the question of who should be considered to be the subject of reproductive genetic research. Second, such research could involve a wide range of possible harms and (...) benefits, making the evaluation and comparison of those harms and benefits a challenging task. Finally, the risk-benefit ratio for this type of research is difficult to estimate because such research can have unpredictable, long-term implications. The article aims to facilitate the assessment of risk-benefit ratios in research on reproductive genetic technologies by proposing and defending some guidelines for dealing with each of these complicating factors. (shrink)