This chapter contains sections titled: Information Management: Confidentiality, Autonomy and Non‐Directiveness Predictive Genetic Testing Childhood Genetic Testing Genetic Screening Informed Consent to Screening Newborn Screening Carrier Screening Prenatal Screening Susceptibility Screening Further Information Management Goals of Genetic Screening: Public Health vs Individual Choice Conclusion References Further reading.

Although deeply committed to the model of nondirective counseling, most genetic counselors enter the profession with certain assumptions about health and disability—for example, that it is preferable to be a hearing person than a deaf person. Thus, most genetic counselors are deeply troubled when parents with certain disabilities ask for assistance in having a child who shares their disability. This ethical challenge benefits little from viewing it as a conflict between beneficence and autonomy. The challenge is better recast (...) as a conflict between parental autonomy and the child's future autonomy. (shrink)

BackgroundThe potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' (...) on the ground and the challenges of community consultation.MethodsThe findings are based on action research methods, including analysis of community engagement documentation and the observations of the authors closely involved in their development and implementation. Qualitative and quantitative content analysis has been used for documentation of staff meetings and trainings, a meeting with 24 community leaders, and 40 large public and 70 small community group meetings. Meeting minutes from a purposive sample of six community representative groups have been analysed using a thematic framework approach.ResultsField workers described challenges around misunderstandings about research, perceived pressure for recruitment and challenges in explaining the study. During consultation, leaders expressed support for the study and screening for sickle cell disease. In community meetings, there was a common interpretation of research as medical care. Concerns centred on unfamiliar procedures. After explanations of study procedures to leaders and community members, few questions were asked about export of samples or the archiving of samples for future research.ConclusionsCommunity engagement enabled researchers to take account of staff and community opinions and issues during the study and adapt messages and methods to address emerging ethical challenges. Field workers conducting informed consent faced complex issues and their understanding, attitudes and communication skills were key influences on ethical practice. Community consultation was a challenging concept to put into practice, illustrating the complexity of assessing information needs and levels of deliberation that are appropriate to a given study. (shrink)

Mitochondrial replacement techniques, known in the popular media as 'three-parent' or 'three-person' IVFs, have the potential to enable women with mitochondrial diseases to have children who are genetically related to them but without such diseases. In the debate regarding whether MRTs should be made available, an issue that has garnered considerable attention is whether MRTs affect the characteristics of an existing individual or whether they result in the creation of a new individual, given that MRTs involve the genetic manipulation (...) of the germline. In other words, do MRTs affect the qualitative identity or the numerical identity of the resulting child? For instance, a group of panelists on behalf of the UK Human Fertilisation and Embryology Authority has claimed that MRTs affect only the qualitative identity of the resulting child, while the Working Group of the Nuffield Council on Bioethics has argued that MRTs would create a numerically distinct individual. In this article, I shall argue that MRTs do create a new and numerically distinct individual. Since my explanation is different from the NCOB's explanation, I shall also offer reasons why my explanation is preferable to the NCOB's explanation. (shrink)

This dissertation considers the bases upon which ethical assessments of parental genetic trait selections for their children can be made. It argues that if parents engage in genetic trait selections, they must act to expand their child's range of open futures, not to constrict their child's range of open futures or to differentially shift their child's range of open futures. It contends that other proposed distinctions, including distinctions between normal and diseased states and between treatment (...) selections and enhancement selections, do not provide a sound basis for making ethical assessments of parental genetic trait selections. It contends that children have a right to an open future that parents hold in trust for their children and that parents must respect in making genetic trait selections.It considers examples of possible parental genetic trait selections regarding children's hearing, height and visual acuity. Finally, it addresses a number of concerns about and objections to this proposed basis for ethical assessment and to parental genetic trait selection generally but concludes that none of these concerns or objections are fatal the approach that if parents use parental genetic trait selection, they must do so in ways that expand their child's range of open futures. (shrink)

In this paper, I analyze the ethical implications of genetic enhancement within the specific framework of the “child’s right to an open future” argument (CROF). Whilst there is a broad ethical consensus that genetic modifications for eradicating diseases or disabilities are in line with – or do not violate – CROF, there is huge disagreement about how to ethically understand genetic enhancement. Here, I analyze this disagreement and I provide a revised formulation of the argument in the (...) specific field of genetic enhancement. First, I argue that CROF is not in contrast with every kind of enhancement. I subsequently discuss whether CROF requires some moral obligations to enhance progeny. My argument is that parents do not have the moral obligation to open as many options as possible for their children. Rather, they should provide them with a reasonable range of opportunities. Finally, I contend that the moral obligations required by CROF are directly dependent on what Allen Buchanan calls the ‘dominant cooperative framework’ in a given society. I conclude by claiming that, at present, parents are not morally obliged to genetically enhance their children since a non-enhanced person already might have access to a reasonable range of opportunities. However, the moral obligation to enhance progeny might arise if a structural modification of the dominant cooperative framework occurs. (shrink)

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

Should significant enhancement of human capacities using genetic technologies become possible, each generation will have an unprecedented power over the next. I argue that it is implausible to leave decisions about the genetic traits of children entirely up to individuals and that communities will sometimes be justified in intervening to protect the interests of children against their parents. While a number of influential authors have suggested that the primary interest that the community should aim to protect is the (...) child’s right to “an open future”, when we examine closely what we desire for our children, it is clear that sometimes we have good reasons to try to restrict their opportunities to pursue dangerous, corrupting, or meaningless projects. Rather than maximise the openness of their future, then, we should strive to ensure that children have access to sufficient opportunities to make available a reasonable range of valuable life-choices. Importantly, both the assessment of what counts as a reasonable range and our judgements about which forms of life are valuable must inevitably make reference to substantive notions about the nature of human flourishing. A more appropriate formulation, then, of what should be protected by law and/or regulation, is the child’s right to a “decent future”, understood as a future which promises a reasonable range of opportunities to lead a life of human flourishing. I then proceed to highlight the challenge posed by the task of settling upon an idea of what counts as a decent future, for multicultural societies wherein ideas about the standards against which we should evaluate human flourishing are likely to be highly contested. (shrink)

Genetic explanations of religious belief, such as Freud’s analysis of theism as ‘a neurotic relic’, pose a problem for theists: how far do such explanations establish the irrationality of religious belief? I argue that genetic analyses of belief suffer from a number of limitations. Showing that some reason-irrelevant factor or factors were sufficient to produce conviction on some occasion would not establish that they were necessary in every case of religious conviction. Showing that reason-irrelevant factors were both necessary (...) and sufficient to produce conviction would not establish that reason-relevant factors were entirely absent. And showing that reason-relevant factors played no role in the adoption of the belief would not establish that they were absent in its continued retention. I conclude that we will profitably investigate the plausibility of religious beliefs by attending to the reasons that can be given for or against them rather than by speculating about their causes. (shrink)

Theories of thought insertion have tended to favour either the content of the putatively alien thought or some peculiarity within the experience itself as a means of explaining why the subject differentiates one thought from another in terms of personal ownership. There are even accounts that try to incorporate both of these characteristics. What all of these explanations share is the view that it is unexceptional for us to experience thought as our own. The aim of this paper is to (...) consider the means by which this awareness of the myness of thought occurs. Why is it that I, as the subject of thought, typically experience a thought as mine? Using research which investigates the development of a child’s awareness of the act of thinking, I will evaluate leading explanations of thought insertion. It is my contention that by understanding the means by which the awareness of one’s ownership of thought develops, we can better assess explanations of thought insertion; and whilst, at present, no theory is fully able to explain the condition, the incorporation of developmental research suggest that we should favour one in particular. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Conceiving People: Genetic Knowledge and the Ethics of Sperm and Egg Donation by Daniel GrollMelissa MoschellaGROLL, Daniel. Conceiving People: Genetic Knowledge and the Ethics of Sperm and Egg Donation. New York: Oxford University Press, 2021. 256 pp. Cloth, $74.00In Conceiving People, Daniel Groll argues that, generally speaking, those intending to conceive with the help of donor gametes have a moral obligation to use an open donor (...) rather than an anonymous one. This obligation is grounded on the likelihood that their children will have a significant future interest in acquiring genetic knowledge, defined as "knowledge of who one's genetic progenitors are." Groll labels this view the significant interest view, which he argues for largely on empirical grounds.Before beginning his defense of the significant interest view, Groll dedicates chapter 2 to arguing that parents who conceive with the help of donor gametes should not keep this a secret from their children. His position on this point reflects the current consensus on the subject, but he offers a novel argument for it, based on the claim that keeping "the secret" in itself harms the parent–child relationship by inherently compromising the intimacy proper to that relationship.Chapter 3 presents the significant interest view in greater detail, distinguishing it from two other approaches: (1) the "Profound Prudential Good view," taken from the work of David Velleman, according to which "genetic knowledge is a profound prudential good and people who lack it will have tremendous trouble figuring out who they are," and (2) the view that "people have a right to genetic knowledge." Unlike these competing approaches, Groll's view "does not directly depend on claims about the value of genetic knowledge" but is based primarily on the fact that "many donor-conceived people are subjectively interested in having genetic knowledge," combined with the claim that parents have an obligation to promote their children's well-being by satisfying their worthwhile significant subjective interests. Because Groll's argument depends on the worth and significance of genetic knowledge, it is vulnerable to what he calls the "sideshow objection"—that is, that the significant interest view is just a sideshow, and the worth of genetic knowledge is what actually does the important normative work. At the same time, Groll's view that the interest in genetic knowledge is worthwhile and significant also leaves him open to the "bionormativity objection," according to which the interest in genetic knowledge "is morally problematic in virtue of evincing and entrenching a kind of bionormative prejudice" that sees the biological family as a normative ideal. [End Page 141]Responding to these two objections is the task of chapters 4 and 5. Chapter 4 argues that genetic knowledge is an objective but "prudentially optional good," meaning that "its value is not fungible, but a life that lacks it is not thereby impoverished." This distinguishes Groll's view from the profound prudential good view, which he characterizes as a form of "genetic chauvinism." Groll argues that genetic knowledge is valuable because it can provide insight into personal identity by answering questions about how I came to be and who I am like, but that the genetic knowledge is not the only or best way to answer these questions (thus explaining why it is optional, and why the significant interest view is not just a sideshow).Chapter 5 addresses the "bionormativity objection," which includes both "heteronormativity" (privileging families headed by a mother and father) and "biogenetic normativity" (privileging genetically related families). Groll ultimately responds to this objection by arguing that, even if (as Groll believes) our current society overemphasizes the importance of genetic relationships, "the interest in genetic knowledge is rationally intelligible quite apart from the bionormative social milieu that surrounds it."Chapters 6 through 8 present the implications of the preceding argument. Chapter 6 argues that the reasons to use an open donor are generally conclusive, because most reasons parents might have to use an anonymous donor do not outweigh the child's significant interest in obtaining genetic knowledge. Chapter 7 considers the responsibilities of gamete donors, arguing that gamete donation is not morally objectionable because it is permissible for donors to transfer prospective parenthood responsibilities... (shrink)

ABSTRACT As parents become increasingly able to make genetic trait selections on behalf of their children, they will need ethical guidance in deciding what genetic traits to select. Dena Davis has argued that parents act unethically if they make selections that constrain their child's range of futures. But some selections may expand the child's range of futures. And other selections may shift the child's range of futures, without either constraining or expanding that range. I contend (...) that not only would parents act unethically if they make selections that constrain the range of their child's futures, they would act unethically if they make selections that shift the range of their child's futures, because selections that shift the range of the child's futures would allow parents to over‐determine their child's futures. Thus, I contend that parents would act ethically only if they make selections that expand their child's range of futures. (shrink)

The paradox of Secher Nbiw, the Golden Path, is that the prescient God Emperor Leto II Atreides – son of Paul – must essentially enslave human kind to bring about its eventual liberation. Future humans with the genetics or technology to evade prescience would be invisible not only to their enemies, but to the God Emperor himself. One of the most important interests humans have is in self‐determination – in being the authors of our own lives. Like science fiction authors, (...) philosophers sometimes contemplate different “possible worlds,” situations that might exist if only events had gone a little differently. For most of human history, selecting the sex of children has primarily been accomplished through the crude and costly method of post natal infanticide. The “openness” of a child's future is difficult to maximize because the pursuit of one opportunity often closes off others. (shrink)

The principle of the child's right to an open future was first proposed by the legal philosopher Joel Feinberg and developed further by bioethicist Dena Davis. The principle holds that children possess a unique class of rights called rights in trust—rights that they cannot yet exercise, but which they will be able to exercise when they reach maturity. Parents should not, therefore, take actions that permanently foreclose on or pre-empt the future options of their children, but leave them the (...) greatest possible scope for exercising personal life choices in adulthood. Davis particularly applies the principle to genetic counselling, arguing that parents should not take deliberate steps to create physically abnormal children, and to religion, arguing that while parents are entitled to bring their children up in accordance with their own values, they are not entitled to inflict physical or mental harm, neither by omission nor commission. In this paper, I aim to elucidate the open future principle, and consider whether it is applicable to non-therapeutic circumcision of boys, whether performed for cultural/religious or for prophylactic/health reasons. I argue that the principle is highly applicable to non-therapeutic circumcision, and conclude that non-therapeutic circumcision would be a violation of the child's right to an open future, and thus objectionable from both an ethical and a human rights perspective. (shrink)

According to a “selective” (as opposed to “instructive”) model of human language capacity, people come to know more than they experience. The discrepancy between experience and eventual capacity (the “poverty of the stimulus”) is bridged by genetically provided information. Hence any hypothesis about the linguistic genotype (or “Universal Grammar,” UG) has consequences for what experience is needed and what form people's mature capacities (or “grammars”) will take. This BBS target article discusses the “trigger experience,” that is, the experience that actually (...) affects a child's linguistic development. It is argued that this must be a subset of a child's total linguistic experience and hence that much of what a child hears has no consequence for the form of the eventual grammar. UG filters experience and provides an upper bound on what constitutes the triggering experience. This filtering effect can often be seen in the way linguistic capacity can change between generations. Children only need access to robust structures of minimal (“degree-0”) complexity. Everything can be learned from simple, unembedded “domains” (a grammatical concept involved in defining an expression's logical form). Children do not need access to more complex structures. (shrink)

In their paper Horton et al argue that it is acceptable to contact an anonymous egg-donor to facilitate diagnostic genetic testing for the donor conceived child, despite the donor, ‘indicating on a historical consent form that she did not wish to take part in future research, and that she did not wish to be informed if she was found to be a carrier of a “harmful inherited condition”’. There are a number of claims embedded in Horton et al’s position (...) that it is acceptable to contact the donor and request that she at least think about participating in genetic testing. In this response. I will go through their main claims and argue that the area of genomic medicine does not justify exceptions to general consent conditions as the authors suppose and conclude that the donor should not be contacted. I will then go on to suggest a policy change that would address Horton et al’s concerns but would not involve over-riding any previously expressed wishes. (shrink)

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

When is commodification acceptable?Preimplantation genetic diagnosis is usually restricted to couples who are eligible for in vitro fertilisation —infertile couples or those with a history of genetic disease. The Human Fertilisation and Embryology Authority in England and the Infertility Treatment Authority in Australia have both given permission for PGD with tissue typing to detect human leucocyte antigen compatibility in order to save an existing sibling with a life threatening condition. The procedure has also been carried out in the (...) United States.1Heavy criticism followed the February 2002 ruling of England’s HFEA to allow a family to try for a child who is free of thalassaemia and a “perfect match” for a sick sibling.2 Then in August …. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Sigewiza’s CureJennifer H. Radden (bio)Keywordsbiopsychosocial model, Hildegard of Bingen, associationist presuppositions, causation, power of suggestionSuzanne Phillips and Monique Boivin provide us with a sympathetic and compelling account of how the various elements of Hildegard’s sophisticated amalgam of ritual, magic, religion, dietary and other medical remedies, caring, and community, formed a seamless cure for Sigewiza’s affliction. Whether Hildgard’s approach reflects an early instance of the biopsychosocial “model” is a separate (...) claim, and may be challenged. But that her ministrations somehow effected a cure in this case seems—if not without a doubt, then very likely.Descriptions of Sigewiza’s condition, with its “clumping together of blackness and steam” caused by a “constellation of humors,” echo those of other medieval writers speaking of the humoral disorder of melancholia—at that time an encompassing category for a range of symptoms and syndromes that would today be assigned as different mental disorders. In these descriptions a variety of explanations for mental illness are quite typically introduced, including biological, social, supernatural, dietary and astrological ones. Phillips and Boivin take care to point out that Hildegard was not offering her remedies as alternatives, but rather proposing them as at work jointly and in a range of causal directions, exhibiting mutual influence, and feedback loops. As these authors say, multiple explanations “were often held simultaneously... in reference to a specific case” (Phillips and Boivin 2007, XX). And the factors that might cause the system to move out of balance are many: food, emotions, the soul, the mind, actions, and spiritual forces. So although deeds may cause bodily changes and their psychological accompaniments, “problems in the diet might affect the humors which would then have psychological effects, which demons might... use as opportunities to cause further trouble in the spirit, mind, and body” (Phillips and Boivin 2007, 365).What first struck me about Hildegard’s description of these many distinct causes interacting in complex ways is its compatibility with the multi-causal accounts of depression (and other mental disorder) frequently proffered in our own time. Daily habits (e.g., diet, sleep and exercise regimes), genetic predispositions, including biological states of fragility, external events, experiences of loss, social roles, and cultural beliefs—not to mention spontaneous recovery, and placebo effects—are all regularly implicated in the onset and course of conditions such as depression.Still, the similarity to these modern causal accounts may be somewhat misleading and we must beware of overstating it. In favoring and pressing on Hildegard’s holistic understanding, moreover, Phillips and Boivin perhaps insufficiently emphasize significant dissimilarities between Hildegard’s and our contemporary accounts.It is the interaction between the various elements making up Sigewiza’s cure that is most noteworthy [End Page 373] in this account, as Phillips and Boivin recognize. Yet that relationship itself seems in some ways surprisingly problematic: difficult for us to make sense of, and profoundly unmodern. Granted, we think we see the way these approaches probably influenced how Sigewiza felt and responded; but it is not so clear how Hildegard saw things. Like a lot of thinking in medieval times, Hildegard’s account provides us with glimpses of an understanding of the world that today looks prescientific and in that respect, almost precausal. (So, to the extent that the biopsychosocial model is understood as a causal one, the case of Sigewiza may exemplify it only inexactly.)It is not merely the range and type of causes, including supernatural and astrological ones, in accounts such as Hildegard’s that distinguish it from today’s analyses. It is also the reliance of such accounts on what seems to be a different metaphysics, one of associations or qualities.Associationist presuppositions can be found in accounts of health and illness from before, during, and long after, Hildegard’s time. Three examples of this pervasive, but puzzling thinking serve to illustrate. The melancholiac’s perceived swarthiness and darkened skin color—regularly noted from the time of the Greek physicians and an established part of the medieval iconography in images of melancholy—were not, or not primarily, thought to be a causal result of the darkness of his bile, as one might suppose. Instead, this coloring seems... (shrink)

Mr. Tang Junyi is the son of the great scholar of Sichuan, Mr. Tang Difeng. As a child, he received much of the nurturing influence of the scholarship in his family; he was a wise young man from a very tender age, with many unusual thoughts. Since the publication of his essay "The theory of Nature in Xun Zi's Thought" when he was fifteen years old and still in middle school, Mr. Tang has pursued the road of a scholar and (...) a thinker with the utmost dedication, as indefatigably today, after several decades, as if it were only the beginning. In the end, with his accomplishments of moral conduct and wisdom, his widespread and profound influence as a teacher, and his magnificent accomplishments in scholarship, he has established an unmatched reputation among academic circles both at home and abroad, and has become an epoch-making philosopher of contemporary China who has stood far above his generation, remained unbent and unsubdued by the test of time, and has established his own school of thought for the ages. (shrink)

It is quite likely that parents will soon be able to use genetic engineering to select the sex of their child by directly manipulating the sex of an embryo. Some might think that this method would be a more ethical method of sex selection than present technologies such as preimplantation genetic diagnosis because, unlike PGD, it does not need to create and destroy “wrong gendered” embryos. This paper argues that those who object to present technologies on the grounds (...) that the embryo is a person are unlikely to be persuaded by this proposal, though for different reasons. (shrink)

We discuss a case where medically optimal investigations of health problems in a donor-conceived child would require their egg donor to participate in genetic testing. We argue that it would be justified to contact the egg donor to ask whether she would consider this, despite her indicating on a historical consent form that she did not wish to take part in future research and that she did not wish to be informed if she was found to be a carrier (...) of a ‘harmful inherited condition’. We suggest that we cannot conjecture what her current answer might be if, by participating in clinical genetic testing, she might help reach a diagnosis for the donor-conceived child. At the point that she made choices regarding future contact, it was not yet evident that the interests of the donor-conceived child might be compromised by her answers, as it was not foreseen that the egg donor’s genome might one day have the potential to enable diagnosis for this child. Fertility consent forms tend to be conceptualised as representing incontrovertible historical boundaries, but we argue that rapid evolution in genomic practice means that consent in such cases is better seen as an ongoing and dynamic process. It cannot be possible to compel the donor to aid in the diagnosis of the donor-conceived child, but she should be given the opportunity to do so. (shrink)

Donald Davidson offers an explanation of first‐person authority that “traces the source of the authority to a necessary feature of the interpretation of speech.” His account is explained, and an interpretation is offered of its two key ingredients: the idea that by using the device of disquotation, a speaker can state the meanings of her words in a specially error‐free way, and the idea that a speaker cannot generally misuse her own words, because it is that use that gives (...) her words their meaning. The account is defended against misinterpretations and criticisms. But it is argued that Davidson does not explain what is most puzzling about our knowledge of the meanings of our words, or about the asymmetry between our knowledge of our own minds and our knowledge of others' minds. Finally, Davidson's argument for the compatibility of first person authority and semantic externalism is explained and defended. (shrink)

It is quite likely that parents will soon be able to use genetic engineering to select the sex of their child by directly manipulating the sex of an embryo. Some might think that this method would be a more ethical method of sex selection than present technologies such as preimplantation genetic diagnosis (PGD) because, unlike PGD, it does not need to create and destroy “wrong gendered” embryos. This paper argues that those who object to present technologies on the (...) grounds that the embryo is a person are unlikely to be persuaded by this proposal, though for different reasons. (shrink)

I distinguish two versions of kin selection theory—a purely genetic version and a version that also appeals to cultural forms of cooperation —and present an argument in favor of using the former when it comes to accounting for the evolution of cooperation in non-human organisms. Specifically, I first show that both GKST and WKST are equally mathematically coherent—they can both be derived from the Price equation—but not necessarily equally empirically plausible, as they are based on different assumptions about the (...) inheritance system underlying the cooperative phenotype. Given this, I then, second, present a model selection theoretic argument in favor of GKST over WKST. This argument is based on the fact that, in non-human cases, the former theory is likely to be as empirically successful as WKST, while containing fewer degrees of freedom. I end by defending both the intrinsic importance of this argument and its relevance to the discussion surrounding the “gene’s eye view of evolution.”. (shrink)

The paper argues for a pragmatic account of genetic explanation. This is to say that when a disease or other trait is termed genetic, the reasons for singling out genes as causes over other, also necessary, genetic and nongenetic conditions are not wholly theoretical but include pragmatic dimensions. Whether the explanation is the presence of a trait in an individual or differences in a trait among individuals, genetic explanations are context-dependent in three ways: they (...) are relative to a causal background of genetic and nongenetic factors; they are relative to a population; and they are relative to the present state of knowledge. Criteria like causal priority, nonstandardness, and causal efficacy that purport to distinguish objectively between genetic causes and nongenetic conditions either incorporate pragmatic elements or fail for other reasons. When the pragmatic dimensions of genetic explanations are recognized, we come to understand the current phenomenon of geneticization to be a reflection of increased technological capacities to manipulate genes in the laboratory, and potentially the clinic, rather than theoretical progress in understanding how diseases and other traits arise. This calls into question the value of the search for theoretical definitions of designations like genetic disease or genetic susceptibility as directives for action. (shrink)

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

ABSTRACT The objective of the study was to identify future lawyers’ and physicians’ views on testing children for Huntington’s disease (HD) against parents’ wishes. After receiving general information about HD, patient autonomy and confidentiality, law students and advanced medical students were shown an interview with a mother suffering from HD who is opposed to informing and testing her two children (aged 10 and 16) for HD. Students then filled out questionnaires concerning their agreement with testing. No significant differences were found (...) between medical and law students or between students from different courses concerning the adolescent son. Three quarters of students thought that he should be told about his mother’s disease, and 91% thought the adolescent son should have the opportunity of genetic testing for HD for himself. However, significant differences were found concerning the 10‐year old son, with 44% of law students and 30% of medical students in favour of testing the child for HD. Students raised some important ethical issues in their elective comments. In conclusion, we found highly positive attitudes towards informing a 16‐year old of his mother’s HD and offering to test him. These attitudes were not in tune with guidelines. Students did not consider several practical and ethical issues of genetic testing of children and adolescents. Specific education should ensure that attitudes are based on sufficiently detailed knowledge about all aspects of genetic testing of children to discourage pressures on persons at risk of HD. (shrink)

The Handicap Principle represents a central theory in the biological understanding of signaling. This paper presents a number of alternative theories to the Handicap Principle and argues that some of these theories may provide a better explanation for the evolution and stability of honest communication.

BackgroundDecision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine (...) the range of influences on these decisions.MethodsMedline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence.Results53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care.ConclusionsThere is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside ‘end-of-life’ care. This review provides a sound basis for empirical research into the important influences on a child’s potential technology dependence. (shrink)

If mental causal explanations are grounded in facts about physical causes and effects, and if there are no psychophysical laws, how can we avoid the conclusion that the mental is causally, and causally explanatorily, irrelevant? The chapter analyses the ways in which this objection has been raised against non‐reductive monism in general, and Davidson's anomalous monism in particular. Then a conception of explanatory relevance for non‐basic physical properties is set out: properties are candidates for explanatory relevance if they play a (...) role in a simple model of causal action; it is intelligible how a property can be causally explanatorily relevant only if it supervenes on low‐level physical properties; but such supervenience does not provide a self‐standing condition of explanatory relevance. A parallel model is developed for the mental case, exploiting the intuitive model of rational action and appealing to supervenience. Anomalous monism is thereby defended against one objection; but, it is argued, this defence challenges the original motivation for thinking that mental events must be physical events. (shrink)

People make significant decisions in contexts of risk and uncertainty. Some of these decisions seem wise under the circumstances, and others seem like irrational choices. In both cases, people offer reasons as clarifications and explanations of these choices to others and to themselves. Argument analysis, a technique well known in philosophy and more generally in the humanities, can explicate the strands of assumptions, intermediate conclusions, data, warrants, and claims that the person articulates. But alone, argument analysis often falls short of (...) revealing why the person’s decision makes sense to that person. Thefindings of empirical research into the influences of cognitive heuristics, the mental shortcuts we all use in decision making and problem solving, adds focus to the analysis of these choices. This paper links these two powerful analytic strategies, and provides a much fuller, more fruitful picture of explanations for seemingly irrational choices. Using an example explanation for deciding not to quit smoking, the paper makes both its methodological argument and its implicit argument for the significance of extending this analytical strategy to applied contexts. The implications of extending this analysis of everyday argument to management, health care, and education could be profound. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Being the Right Kind of Parent:Conceiving PeopleCamisha Russell (bio)Daniel Groll's Conceiving People makes one central claim regarding the ethics of using egg or sperm donations to create a child (that one intends to parent): "[P]arents should use an open donor because doing so puts their resulting child in a good position to satisfy the child's likely future interest in having genetic knowledge" (Groll 2021, 12, original italics).Amid (...) myriad thorny ethical questions surrounding assisted reproduction, Groll's decision to focus on a choice that intended parents in need of donor gametes must make before their future child is even conceived—a choice that is typically taken very seriously—makes a lot of sense. The question is live, rarely completely determined as a matter of policy or law, and, as Groll demonstrates, important to most donor-conceived people (and therefore to the families of which they are a part). For this increasing number of individuals and families, a cultural shift in how we think about open versus anonymous donors would have a significant (and as Groll argues, positive) impact.Groll's carefully built argument is important not only for the paths of ethical reasoning that it highlights, but for those common rationales it gently but firmly sets aside (e.g., the donor-conceived person's medical need to know their genetic history or the idea that knowledge of one's genetic origins is the best or only way to truly know oneself). Groll's work is attentive to the types of relationships that foster the emotional health of families, and it's grounded in the experiences and desires articulated by donor-conceived people themselves. For this reader, these are the book's greatest strengths, along with the fact that Groll is often quite funny in his examples, which makes the examples highly relatable.Of course, the challenge for philosophers in writing books of ethical importance for "laypeople" is to offer something an average educated adult can understand while addressing the more technical theoretical issues that matter to ethicists. I would expect Groll's text to satisfy ethicists because his definitions and distinctions are scrupulously clear, and he engages the existing philosophical literature well. As for laypeople, there are surely a few moments in which they will find themselves in the theoretical weeds, so to speak, but Groll has [End Page 193] successfully made the book largely modular, such that they should get a lot from just reading the chapters of direct interest (Groll 2021, 29).Chapter 2, "Keeping Secrets," is essential for intended parents seeking ethical guidance. Groll notes that professional opinion on donor conception has shifted from seeing nondisclosure of a child's donor-conceived status as a moral requirement (to protect privacy and avoid family stigma) to recommending disclosure. He then reviews standard arguments for disclosure: (1) the "profound importance" of known genetic origins to health identity formation, (2) the medical importance of knowing to whom you are (and are not) genetically related, and (3) the harm that keeping secrets can do to family members and family functioning. While Groll agrees with the latter two arguments, he introduces and emphasizes a new argument: the Intimacy argument, in which he convincingly argues that keeping a child's genetic origins secret "violates norms of intimacy by creating distance between parents and children that is at odds with the demands of intimacy in the parent-child relationship" (Groll 2021, 44, original italics). Though, in many ways, this chapter's argument is separate from the central argument for the use of open donors constructed in the rest of the book, I find it compelling and wonder whether it could hold up more of the open donor argument, placing less weight on the Significant Interest view that Groll introduces in the next chapter (and the concerns regarding bionormativity that emerge from that view).In the third chapter, Groll moves from disclosure to the information that's available to be disclosed. That is, it is one thing to commit to telling a child they were donor-conceived after conception. It is another to commit before conception to choosing a donor willing to be known to the future child when... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ethics & the Enviornment 6.2 (2001) 114-118 [Access article in PDF] Book Review Child versus Childmaker: Future Persons and Present Duties in Ethics and the Law Child versus Childmaker: Future Persons and Present Duties in Ethics and the Law. Melinda A. Roberts. Lanham, Md.: Rowman & Littlefield, 1998. Pp. 235. ISBN 0-8476-8901-8 (Paperback) This book will provide the reader with a systematic examination of some of the most difficult (...) philosophical issues involved in procreation, and most notably those raised by wrongful life claims and the non-identity problem. Can an action without which a given child would not even exist be simultaneously said to harm this very child? This is the key question addressed in this book. It is relevant not only to bioethicists, but also to those concerned with the possibility of harming members of future generations in general. The author proceeds with remarkable clarity in three steps. First, she unveils the core intuition and unfolds the key implications of what is standardly referred to as the person-affecting view. Second, she focuses on the now famous non-identity problem that is supposed to raise a serious challenge to the plausibility of the person-affecting view. Third, wrongful life and human cloning are taken as illustrations of the problem.The starting point is thus the person-affecting or personalist view. The author argues that what is at stake in such a view is not only a concern for [End Page 114] persons (as opposed to plants or stones), but also for definite persons. The core intuition that "what is bad must be bad for someone" (Derek Parfit) implies a comparison between two states of the same person. As she puts it, "the pairwise comparisons of worlds appealed to within personalism are always in respect of particular people" (6). This does not necessarily imply consequentialism, contrary to what Roberts claims (e.g., 1), at least if we understand the latter, for example, as Philip Pettit does. 1 Moreover, one may very well argue that what is at the heart of the person-affecting intuition is a sense that an action needs to be assessed on the basis of its effect on persons, which would not necessarily imply that such effects require a comparison between two states of the same person. Nevertheless, the extent to which a person-affecting conception--as defined by Roberts--will be in trouble depends on the extent to which comparisons between the same person's states cannot operate. This is precisely where to introduce the idea of a non-identity context, that is, a situation in which not committing an allegedly harmful act would or could also have meant the nonexistence of the allegedly harmed person. For example, had a medical doctor not committed this preconceptional diagnostic mistake (or a father taken a slower or faster means of transportation to come back home), this child would or could not have existed. Can we thus say that the practitioner harmed the child who turned out to be heavily handicapped due, for example, to a genetically transmissible disease (or that the father harmed his child by leaving him with a very polluted environment due to his use of big cars as a means of transportation)?One key feature of Roberts's approach is that she restricts the scope of the non-identity problem to cases where not committing the allegedly harmful action would have made it impossible for this child to have existed ("two-alternative" cases) (26, 319, 325). This entails that whenever this very child could still have come to existence in the allegedly harmful action's absence, whatever the likelihood of such a coming to existence, we would fall outside a non-identity context ("three-alternative" cases) (27; 94-95). What matters to Roberts is whether or not the same child could have been born better than he is, not whether he would, as a matter of fact, have been born at all. The consequence is that in cases where the same child could have been born, say, unhandicapped, the author remains... (shrink)

Does life have meaning? What is flourishing? How do we attain the good life? Philosophers, and many others of us, have explored these questions for centuries. As Eva Feder Kittay points out, however, there is a flaw in the essential premise of these questions: they seem oblivious to the very nature of the ways in which humans live, omitting a world of co-dependency, and of the fact that we live in and through our bodies, whether they are fully abled or (...) disabled. Our dependent, vulnerable, messy, changeable, and embodied experience colors everything about our lives both on the surface and when it comes to deeper concepts, but we tend to leave aside the body for the mind when it comes to philosophical matters. Disability offers a powerful challenge to long-held philosophical views about the nature of the good life, what provides meaning in our lives, and the centrality of reason, as well as questions of justice, dignity, and personhood. These concepts need not be distant and idealized; the answers are right before us, in the way humans interact with one another, care for one another, and need one another--whether they possess full mental capacities or have cognitive limitations. We need to revise our concepts of things like dignity and personhood in light of this important correction, Kittay argues. This is the first of two books in which Kittay will grapple with just how we need to revisit core philosophical ideas in light of disabled people's experience and way of being in the world. Kittay, an award-winning philosopher who is also the mother to a multiply-disabled daughter, interweaves the personal voice with the philosophical as a critical method of philosophical investigation. Here, she addresses why cognitive disability can reorient us to what truly matters, and questions the centrality of normalcy as part of a good life. With profound sensitivity and insight, Kittay examines other difficult topics: How can we look at the ethical questions regarding prenatal testing in light of a new appreciation of the personhood of disabled people? What do new possibilities in genetic testing imply for understanding disability, the family, and bioethics? How can we reconsider the importance of care, and how does it work best? In the process of pursuing these questions, Kittay articulates an ethic of care, which is the ethical theory most useful for claiming full rights for disabled people and providing the opportunities for everyone to live joyful and fulfilling lives. She applies the lessons of care to the controversial alteration of severely cognitively disabled children known as the Ashley Treatment, whereby a child's growth is halted with extensive estrogen treatment and related bodily interventions are justified. This book both imparts lessons that advocate on behalf of those with significant disabilities, and constructs a moral theory grounded on our ability to give, receive, and share care and love. Above all, it aims to adjust social attitudes and misconceptions about life with disability. (shrink)

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex’s parents must decide whether to conduct sequencing on his siblings to help determine if there is a genetic cause for (...) Alex’s developmental disabilities. Second, Alex’s parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex’s parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child. (shrink)

BackgroundBreaking bad news to mothers whose children has disability is an important role of physicians. There has been considerable speculation about the inevitability of parental dissatisfaction with how they are informed of their child’s disability. Egyptian mothers’ preferences for how to be told the bad news about their child’s disability has not been investigated adequately. The objective of this study was to elicit Egyptian mothers’ preferences for how to be told the bad news about their child’s disability.MethodsMothers of 100 infants (...) recently diagnosed with Down syndrome were interviewed regarding their preferences for how to be told bad news. Mothers were recruited through outpatient clinics of the Pediatric Genetics Department at Fayoum University Hospital (located 90 km southwest of Cairo, Egypt) from January to June 2011.Results and discussionQuestionnaire analyses revealed nine themes of parental preferences for how to be told information difficult to hear. Mothers affirmed previously reported recommendations for conveying bad medical news to parents, including being told early, being told of others with a similar condition, and being informed of the prognosis.ConclusionsMothers affirmed communication themes previously discussed in the literature, such as being told early, and being informed of the prognosis. Although more research is needed in this important area, we hope that our findings will stimulate future search and help health care providers in different societies establish guidelines for effectively communicating bad news. (shrink)

Despite the advent of CRISPR, safe and effective gene editing for human enhancement remains well beyond our current technological capabilities. For the discussion about enhancing human beings to be worth having, then, we must assume that gene-editing technology will improve rapidly. However, rapid progress in the development and application of any technology comes at a price: obsolescence. If the genetic enhancements we can provide children get better and better each year, then the enhancements granted to children born in any (...) given year will rapidly go out of date. Sooner or later, every modified child will find him- or herself to be “yesterday’s child.” The impacts of such obsolescence on our individual, social, and philosophical self-understanding constitute an underexplored set of considerations relevant to the ethics of genome editing. (shrink)

Design: Qualitative interview study. Participants: Fifty-nine patients with a family history of cancer who attend a regional cancer genetics clinic in the UK were interviewed about their current and previous research experiences. Findings: Interviewees gave a range of explanations for research participation. These were categorised as social—research participation benefits the wider society by progressing science and improving treatment for everyone; familial—research participation may improve healthcare and benefit current or future generations of the participant’s family; and personal—research participation provides therapeutic or (...) non-therapeutic benefits for oneself. Conclusions: We discuss the distinction drawn between motives for research participation focused upon self and others, and observe that personal, social and familial motives can be seen as interdependent. For example, research participation that is undertaken to benefit others, particularly relatives, may also offer a number of personal benefits for self, such as enabling participants to feel that they have discharged their social or familial obligations. We argue for the need to move away from simple, static, individualised notions of research participation to a more complex, dynamic and inherently social account. (shrink)

By the example of deafness the article examines the ethical problems that arise when preimplantation genetic diagnosis is used for the intentional heredity of genetic defects. In the first two sections the relevant rules of the German Embryo Protection Law and the motives of deaf couples to desire a handicapped child are explained. Subsequently, it is asked whether the positive selection of genetic defects can harm or otherwise wrong the future child. Moreover, a possible duty of prospective (...) parents to prefer an embryo which will most probably experience a higher quality of life is discussed. Finally, the question is raised whether parents have a right to refuse medical treatment that may alleviate their child's handicap. As a result, it is argued that neither a legal ban on the positive selection of handicapped embryos nor compulsory treatment of deaf children are ethically justified. (shrink)

Decisions regarding life-sustaining medical treatments for young children with profound disabilities can be extremely challenging for families and clinicians. In this study, Brick and colleagues1 surveyed adult residents of the UK about their attitudes regarding withdrawal of treatment using a series of vignettes of infants with varying levels of intellectual and physical disability, based on real and hypothetical cases.1 This is an interesting study on an important topic. We first highlight the limitations of using these survey data to inform (...) public policy and then offer a different interpretation from the authors’ regarding their findings about the value the public appears to place on relational capacity. The authors asked members of the lay public to interpret a disabled child’s best interest in a series of vignettes. The respondents were 92% white; 59% were atheist or reported no religious affiliation. Though the authors note this lack of diversity as a limitation, we would add that this limitation is particularly problematic in this context. Minority views on this issue may differ significantly from the majority perspective. When the stakes are high, use of public opinion data to directly inform policy requires, at a minimum, a representative sample reflecting both the true diversity of views within the public and a method to justly account for the alternate views of the minority. Even if the sampled population were more …. (shrink)

In debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie consideration for not taking steps that would entail denying the future adult the opportunity to decide for herself about what to know about her own genome. While the argument can be overridden when other, morally more weighty considerations are at stake, whether this is the case can only be determined (...) in concrete cases. Importantly, when children grow into adolescents, respect for future autonomy will have to give way to respecting their emerging autonomy. When pediatric exome sequencing is done for complex conditions not involving developmental delay, respect for the child’s future or emerging autonomy should be a primary consideration for those charged with deciding on behalf of the child. Building on what Emanuel and Emanuel have termed the ‘deliberative model’ of shared decision making, we argue that if parents fail to give these considerations their due, professionals should actively invite them to do so. Taking a directive stance may be needed in order to make sure that the future or emerging autonomy of the child are duly considered in the decision-making process, but also to help the parents and themselves to shape their respective roles as responsible care-givers. (shrink)

The handicap principle has come under significant challenge both from empirical studies and from theoretical work. As a result, a number of alternative explanations for honest signaling have been proposed. This paper compares the evolutionary plausibility of one such alternative, the "hybrid equilibrium," to the handicap principle. We utilize computer simulations to compare these two theories as they are instantiated in Maynard Smith's Sir Philip Sidney game. We conclude that, when both types of communication are possible, evolution is (...) unlikely to lead to handicap signaling and is far more likely to result in the partially honest signaling predicted by hybrid equilibrium theory. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ethics & the Enviornment 6.2 (2001) 114-118 [Access article in PDF] Book Review Child versus Childmaker: Future Persons and Present Duties in Ethics and the Law Child versus Childmaker: Future Persons and Present Duties in Ethics and the Law. Melinda A. Roberts. Lanham, Md.: Rowman & Littlefield, 1998. Pp. 235. ISBN 0-8476-8901-8 (Paperback) This book will provide the reader with a systematic examination of some of the most difficult (...) philosophical issues involved in procreation, and most notably those raised by wrongful life claims and the non-identity problem. Can an action without which a given child would not even exist be simultaneously said to harm this very child? This is the key question addressed in this book. It is relevant not only to bioethicists, but also to those concerned with the possibility of harming members of future generations in general. The author proceeds with remarkable clarity in three steps. First, she unveils the core intuition and unfolds the key implications of what is standardly referred to as the person-affecting view. Second, she focuses on the now famous non-identity problem that is supposed to raise a serious challenge to the plausibility of the person-affecting view. Third, wrongful life and human cloning are taken as illustrations of the problem.The starting point is thus the person-affecting or personalist view. The author argues that what is at stake in such a view is not only a concern for [End Page 114] persons (as opposed to plants or stones), but also for definite persons. The core intuition that "what is bad must be bad for someone" (Derek Parfit) implies a comparison between two states of the same person. As she puts it, "the pairwise comparisons of worlds appealed to within personalism are always in respect of particular people" (6). This does not necessarily imply consequentialism, contrary to what Roberts claims (e.g., 1), at least if we understand the latter, for example, as Philip Pettit does. 1 Moreover, one may very well argue that what is at the heart of the person-affecting intuition is a sense that an action needs to be assessed on the basis of its effect on persons, which would not necessarily imply that such effects require a comparison between two states of the same person. Nevertheless, the extent to which a person-affecting conception--as defined by Roberts--will be in trouble depends on the extent to which comparisons between the same person's states cannot operate. This is precisely where to introduce the idea of a non-identity context, that is, a situation in which not committing an allegedly harmful act would or could also have meant the nonexistence of the allegedly harmed person. For example, had a medical doctor not committed this preconceptional diagnostic mistake (or a father taken a slower or faster means of transportation to come back home), this child would or could not have existed. Can we thus say that the practitioner harmed the child who turned out to be heavily handicapped due, for example, to a genetically transmissible disease (or that the father harmed his child by leaving him with a very polluted environment due to his use of big cars as a means of transportation)?One key feature of Roberts's approach is that she restricts the scope of the non-identity problem to cases where not committing the allegedly harmful action would have made it impossible for this child to have existed ("two-alternative" cases) (26, 319, 325). This entails that whenever this very child could still have come to existence in the allegedly harmful action's absence, whatever the likelihood of such a coming to existence, we would fall outside a non-identity context ("three-alternative" cases) (27; 94-95). What matters to Roberts is whether or not the same child could have been born better than he is, not whether he would, as a matter of fact, have been born at all. The consequence is that in cases where the same child could have been born, say, unhandicapped, the author remains... (shrink)

BackgroundBreaking bad news to mothers whose children has disability is an important role of physicians. There has been considerable speculation about the inevitability of parental dissatisfaction with how they are informed of their child’s disability. Egyptian mothers’ preferences for how to be told the bad news about their child’s disability has not been investigated adequately. The objective of this study was to elicit Egyptian mothers’ preferences for how to be told the bad news about their child’s disability.MethodsMothers of 100 infants (...) recently diagnosed with Down syndrome were interviewed regarding their preferences for how to be told bad news. Mothers were recruited through outpatient clinics of the Pediatric Genetics Department at Fayoum University Hospital (located 90 km southwest of Cairo, Egypt) from January to June 2011.Results and discussionQuestionnaire analyses revealed nine themes of parental preferences for how to be told information difficult to hear. Mothers affirmed previously reported recommendations for conveying bad medical news to parents, including being told early, being told of others with a similar condition, and being informed of the prognosis.ConclusionsMothers affirmed communication themes previously discussed in the literature, such as being told early, and being informed of the prognosis. Although more research is needed in this important area, we hope that our findings will stimulate future search and help health care providers in different societies establish guidelines for effectively communicating bad news. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Mourning or MelancholiaJ. Melvin Woody (bio)Keywords“objective correlative”, depression, grief, cognitive-affective dissonanceIn a celebrated and controversial critical essay, T.S. Eliot faults Shakespeare's Hamlet on the grounds that the playwright has not provided sufficient “objective correlative” for the moods of his melancholy Dane. For lack of the “complete adequacy of the external to the emotion” that he finds in Shakespeare's other tragedies, Eliot judges that “the play is almost certainly an (...) artistic failure” (Eliot 1921, 101, 98). Dr. Bailey's explanation of Colin's melancholy provokes parallel critical reflections. When his initial expectation that he will discover the cause of depression in traumatic battle experiences in Iraq proves groundless, he finds that cause, instead, in the very absence of traumatic experiences. I cannot but wonder whether the lack of opportunity to prove heroic provides an adequate objective correlative for Colin's mood.To be sure, persistent sadness cannot be regarded as pathological if adequate reasons for sadness also persist. There lies the difference between mourning and melancholia. As Freud remarks at the outset of his comparison of the two, “although grief involves grave departures from the normal attitudes to life, it never occurs to us to regard it as a morbid condition and hand the mourner over to medical treatment.” Even though the mourner displays almost all the same symptoms as melancholia, where there is a recognizable objective correlative, we look upon any interference “as inadvisable or even harmful... because we know so well how to explain it... this attitude does not seem to us pathological” (Freud 1963, 165). Neither the absence of battlefield trauma nor the lack of heroic opportunities seems sufficient occasion for Colin's sadness. But (perhaps) that very explanatory insufficiency justifies regarding his plight as pathological, as a case of melancholia rather than mourning and therefore as warranting psychiatric interference. Insofar as that is true, the self-criticisms engendered by his trauma-free stint in Iraq might best be regarded as an effect rather than cause of his depression. Freud found this sort of “fall in self esteem” that “finds utterance in self reproaches and self revilings” to be the singular feature that distinguishes melancholia from mourning.” In the clinical picture of melancholia, dissatisfaction with the self on moral grounds is far the most outstanding feature” (Freud 1963, 167, 169).Anyone who has dealt with depression will recognize such feelings as standard symptoms. The DSM- IV cites “feelings of worthlessness or excessive or inappropriate guilt” as one of the defining criteria of a major depressive episode and “low self esteem” as a diagnostic criterion of dysthymic disorder.Freud speculated that the melancholic's attacks upon himself actually aim at an abandoned but internalized love object. But he acknowledged [End Page 245] that his speculation was based on “a small number of cases the psychogenic nature of which was indisputable,” and that some cases of melancholia suggest more somatic causes. Recent psychiatry has veered sharply toward somatic causes and cures, although the psychogenic nature of depression associated with traumatic stress is generally acknowledged. But in the absence of trauma and stress, as in Colin's case, a somatic account seems more plausible than supposing that the depression is triggered by that very absence.The contrast between somatic and psychological sources of depression threatens to prove distracting, however. We are not faced with a simple either/or here, and however we sort out the genetic, environmental, somatic, and psychological sources of depression in any given case, the depression itself is always a profoundly incarnate experience. Moreover, what seems of especial pertinence to this case, the loss of self-esteem and feelings of worthlessness and guilt seem to prevail regardless of the particular balance of causes of the depression and can, therefore, be regarded as characteristic symptoms rather than explanatory causes of the mood. And the blackness of melancholy typically extends well beyond such negative self-judgments to cast a shadow on the depressive's whole world and future.Epistemology and pathology converge in the clinical diagnosis of depression. Depression seems pathological insofar as it seems unreasonable in light of the circumstances as we apprehend them. Of course, the person who is depressed... (shrink)

Background Families whose child has unexplained intellectual or developmental differences often hope that a genetic diagnosis will lower barriers to community-based therapeutic and support services. However, there is little known about efforts to mobilize genetic information outside the clinic or how socioeconomic disadvantage shapes and constrains outcomes.Methods We conducted an ethnographic study with predominantly socioeconomically disadvantaged families enrolled in a multi-year genomics research study, including clinic observations and in-depth interviews in English and Spanish at multiple time points. Coding (...) and thematic development were used to collaboratively interpret fieldnotes and transcripts.Results Thirty-two families participated. Themes included familial expectations that a genetic diagnosis could be translated into information, understanding, and assistance to improve the quality of a child’s day-to-day life. After sequencing, however, genetic information was not readily converted into improved access to services beyond the clinic, with families often struggling to use a genetic diagnosis to advocate for their child.Conclusion Families’ ability to use a genetic diagnosis as an effective advocacy tool beyond the clinic was limited by the knowledge and resources available to them, and by the eligibility criteria used by therapeutic service providers’ – which focused on clinical diagnosis and functional criteria more than etiologic information. All families undertaking genomic testing, particularly those who are disadvantaged, need additional support to understand the limits and potential benefits of genetic information beyond the clinic. (shrink)

Parenting requires mothers to read social cues and understand their children. It is particularly important that they recognise their child’s emotions to react appropriately, for example, with compassion to sadness or compersion to happiness. Despite this importance, it is unclear how motherhood affects women’s ability to recognise emotions associated with facial expressions in children. Using videos of an emotionally neutral face continually and gradually taking on a facial expression associated with an emotion, we quantified the amount of information needed to (...) match the emotion with the facial expression. Mothers needed more information than non-mothers to match the emotions with the facial expressions. Both mothers and non-mothers performed equally on a control task identifying animals instead of emotions, and both groups needed less information when recognising the emotions associated with facial expressions in adolescents than pre-schoolers. These results indicate that mothers need more information for to correctly recognise typically associated emotions in child facial expressions but not for similar tasks not involving emotions. A possible explanation is that child facial expressions associated with emotions may have a greater emotional impact on mothers than non-mothers leading to task interference but possibly also to increased compassion and compersion. (shrink)

Behaving presents an overview of the recent history and methodology of behavioral genetics and psychiatric genetics, informed by a philosophical perspective. Kenneth F. Schaffner addresses a wide range of issues, including genetic reductionism and determinism, "free will," and quantitative and molecular genetics. The latter covers newer genome-wide association studies that have produced a paradigm shift in the subject, and generated the problem of "missing heritability." Schaffner also presents cases involving pro and con arguments for genetic testing for IQ (...) and for Attention Deficit Hyperactivity Disorder. Schaffner examines the nature-nurture controversy and Developmental Systems Theory using C. elegans or "worm" studies as a test case, concluding that genes are special and provide powerful tools, including "deep homology," for investigating behavior. He offers a novel account of biological knowledge emphasizing the importance of models, mechanisms, pathways, and networks, which clarifies how partial reductions provide explanations of traits and disorders. The book also includes examinations of personality genetics and of schizophrenia and its etiology, alongside interviews with prominent researchers in the area, and discusses debates about psychosis that led to changes in the DSM-5 in 2013.Schaffner concludes by discussing additional philosophical implications of the genetic analyses in the book, some major worries about "free will," and arguments pro and con about why genes and DNA are so special. Though genes are special, newer perspectives presented in this book will be needed for progress in behavioral genetics- perspectives that situate genes in complex multilevel prototypic pathways and networks. With a mix of optimism and pessimism about the state of the field and the subject, Schaffner's book will be of interest to scholars in the history and philosophy of science, medicine, and psychiatry. (shrink)

“An original, compelling, and provocative exploration of ethical issues in our society, with thoughtful and balanced commentary. I have not seen anything like it.” —Alan Lightman, author of Einstein’s Dreams Drawing upon the author’s two decades teaching medical ethics, as well as his work as a practicing psychiatrist, this profound and addictive little book offers up challenging ethical dilemmas and asks readers, What would you do? A daughter gets tested to see if she’s a match to donate a kidney (...) to her father. The test reveals that she is not the man’s biological daughter. Should the doctor tell the father? Or the daughter? A deaf couple prefers a deaf baby. Should they be allowed to use medical technology to ensure they have a child who can’t hear? Who should get custody of an embryo created through IVF when a couple divorces? Or, when you or a loved one is on life support, Who says you’re dead? In short, engaging scenarios, Dr. Appel takes on hot-button issues that many of us will confront: genetic screening, sexuality, privacy, doctor-patient confidentiality. He unpacks each hypothetical with a brief reflection drawing from science, philosophy, and history, explaining how others have approached these controversies in real-world cases. Who Says You’re Dead? is designed to defy easy answers and to stimulate thought and even debate among professionals and armchair ethicists alike. (shrink)