Autism Spectrum Condition presents a challenge to social and relational accounts of the self, precisely because it is broadly seen as a disorder impacting social relationships. Many influential theories argue that social deficits and impairments of the self are the core problems in ASC. Predictive processing approaches address these based on general purpose neurocognitive mechanisms that are expressed atypically. Here we use the High, Inflexible Precision of Prediction Errors in Autism approach in the context of cultural niche construction to explain (...) atypicalities of the relational self, specifically its minimal, extended, and intersubjective aspects. We contend that the social self in ASC should not be seen as impaired, but rather as an outcome of atypical niche construction. We unpack the scientific, ethical, and practical consequences of this view, and discuss implications for how the challenges that autistic persons face should be approached. (shrink)

Autism Spectrum Condition presents a challenge to social and relational accounts of the self, precisely because it is broadly seen as a disorder impacting social relationships. Many influential theories argue that social deficits and impairments of the self are the core problems in ASC. Predictive processing approaches address these based on general purpose neurocognitive mechanisms that are expressed atypically. Here we use the High, Inflexible Precision of Prediction Errors in Autism approach in the context of cultural niche construction to explain (...) atypicalities of the relational self, specifically its minimal, extended, and intersubjective aspects. We contend that the social self in ASC should not be seen as impaired, but rather as an outcome of atypical niche construction. We unpack the scientific, ethical, and practical consequences of this view, and discuss implications for how the challenges that autistic persons face should be approached. (shrink)

The diagnosis of autism is on the rise. Autistic people, parents, professionals, and policy makers alike face important questions about the right approach toward autism. For example, there are questions about the desirability of early detection, the role and consequences of underlying cognitive theories, and whether autism is a disorder to be treated or an identity to be respected. How does the fact that autism is a heterogeneous concept affect the answers to these questions? Who has the authority or knowledge (...) to speak on behalf of people with autism? In this paper, we describe a cluster of research topics which should be on the agenda of the emerging field of autism ethics. These topics include the very concept of autism itself, the question whether autism is primarily an identity or a disorder, the ethical questions that parents of autistic children face, metaethical questions, the ethical consequences of epistemological questions, and a cluster of questions related to social justice, stigma, and paternalism. (shrink)

Psychiatric diagnoses such as Autism Spectrum Disorder (ASD) are primarily attributed on the basis of behavioral criteria. The aim of most of the biomedical research on ASD is to uncover the underlying mechanisms that lead to or even cause pathological behavior. However, in the philosophical and sociological literature, it has been suggested that autism is also to some extent a ‘social construct’ that cannot merely be reduced to its biological explanation. We show that a one-sided adherence to either a biological (...) or a social explanation leads to a moral dilemma, a Catch-22, for autistics and for those living with them. Such explanations close the space for self-identifying as autistic and at the same time being considered to be in good mental health. They foreclose the possibility of making sense of the lived experience of (and with) autistics. In this paper we argue that such lack of space for moral imagination inherently leads to scientific stalemate. We propose that one can only go beyond this stalemate by taking an ethical stance in theorizing, one that enables better intersubjective understanding. Only on such a view can behavior and biology be linked without either disconnecting them or reducing the one to the other. (shrink)

Beliefs about the moral status of children have changed significantly in recent decades in the Western world. At the same time, knowledge about likely consequences for children of individual, parental, and societal choices has grown, as has the array of choices that (prospective) parents may have at their disposal. The intersection between these beliefs, this new knowledge, and these new choices has created a minefield of expectations from parents and a seemingly ever-expanding responsibility towards their children. Some of these new (...) challenges have resulted from progress in genetics and neuroscience. It is these challenges that we focus on in this introduction and volume. (shrink)

The combination of the issue of return of individual genetic results/incidental findings and paediatric biobanks is not much discussed in ethical literature. The traditional arguments pro and con return of such findings focus on principles such as respect for persons, autonomy and solidarity. Two dimensions have been distilled from the discussion on return of individual results in a genetic research context: the respect for a participant’s autonomy and the duty of the researcher. Concepts such as autonomy and solidarity do not (...) fit easily in the discussion when paediatric biobanks are concerned. Although parents may be allowed to enrol children in minimal risk genetic research on stored tissue samples, they should not be given the option to opt out of receiving important health information. Also, children have a right to an open future: parents do not have the right to access any genetic data that a biobank holds on their children. In this respect, the guidelines on genetic testing of minors are applicable. With regard to the duty of the researcher the question of whether researchers have a more stringent duty to return important health information when their research subjects are children is more difficult to answer. A researcher’s primary duty is to perform useful research, a policy to return individual results must not hamper this task. The fact that vulnerable children are concerned, is an additional factor that should be considered when a policy of returning results is laid down for a specific collection or research project. (shrink)

In September 2020, the surgeon Paulo Macchiarini, who used stem cell technology to enable the transplants of artificial and donor trachea, was charged with aggravated assault in Sweden. In this comment, we argue that the Ethics Council of the Karolinska Institute should have considered issues from philosophy of science when they were brought to their attention, rather than dismiss them as irrelevant to research ethics. We demonstrate how conceptual issues of a philosophy-of-science-kind about clinical research and medical practice should be (...) integral to research ethics. (shrink)

With the new and highly accurate noninvasive prenatal test, new options for screening become available. I contend that the current state of the art of NIPT is already in need of a thorough ethical investigation and that there are different points to consider before any chromosomal or subchromosomal condition is added to the screening panel of a publicly funded screening program. Moreover, the application of certain ethical principles makes the inclusion of some conditions unethical in a privately funded scheme, even (...) if such screening would enhance a woman’s reproductive autonomy. On the one hand, a screening program aimed solely at the detection of Down syndrome is subject to the technological imperative and should be reassessed in the light of technologies that allow for the detection of conditions that are at least as severe. On the other hand, some chromosomal conditions should not be included in any screening programs, because this would violate certain ethical principles, such as the right of the future child to genetic privacy. (shrink)

The sources, extent and margins of parental obligations in taking decisions regarding their children’s medical care are subjects of ongoing debates. Balancing children’s immediate welfare with keeping their future open is a delicate task. In this paper, we briefly present two examples of situations in which parents may be confronted with the choice of whether to authorise or demand non-therapeutic interventions on their children for the purpose of fertility preservation. The first example is that of children facing cancer treatment, and (...) the second of children with Klinefelter syndrome. We argue that, whereas decisions of whether to preserve fertility may be prima facie within the limits of parental discretion, the right to an open future does not straightforwardly put parents under an obligation to take actions that would detect or relieve future infertility in their children—and indeed in some cases taking such actions is problematic. (shrink)

Purpose: There is a widespread recognition that biomedical explanations offer benefits to those diagnosed with a mental disorder. Recent research points out that such explanations may nevertheless have stigmatizing effects. In this study, this ‘mixed blessing’ account of biomedical explanations is investigated in a case of philosophical interest: Tourette Syndrome. Method: We conducted a vignette survey with 221 participants in which we first assessed quantitative attributions of blame as well as the desire for social distance for behavior associated with Tourette (...) Syndrome. Results: In our study, it is confirmed that in the case of biomedical explanations, less blame is attributed than in the case of psychosocial explanations. When presented with a mixed explanation stressing an entanglement of biological and psychosocial factors this did not increase blame attribution. The desire for social distance is unaffected by the type of explanation but the participants’ free text feedback indicates this might obfuscate an underlying dilemma between stigma and blame revealed in recent research. Conclusion: There seems to be potential for blame reduction in explanations where biological and psychosocial factors are entangled. However, dynamic, ‘epigenetic’, explanations require further qualitative research to be performed as well as a philosophical framework to account for the ‘mixed blessings’ account. (shrink)

In this paper, I review some of the discussions on procreative beneficence and procreative autonomy in the context of postponed motherhood and compare the considerations to the context of advanced paternal age. In doing so, I will give an overview of the main scientific findings with regard to how older age in men affects the health of future offspring. I shall demonstrate how the discrepancy between the media coverage and policies on postponed motherhood and postponed fatherhood mistakenly suggests that women (...) are more responsible than men for the health of offspring. (shrink)

The conditions of life of many companion animals and the rate at which they are surrendered to shelters raise many ethical issues. What duties do we have towards the dogs that live in our society? To suggest answers to these questions, I first give four possible ways of looking at the relationship between man and dog: master–slave, employer–worker, parent–child, and friend–friend. I argue that the morally acceptable relationships are of a different kind but bears family resemblances to the latter three. (...) As dogs are beings with an interest in their wellbeing, society has certain duties towards the dogs, which can be translated in legislation. But human beings also have special responsibilities towards the dogs they take into their care. Such responsibilities entail caring for their emotional and physical welfare, but also ensuring a bond of trust, which should not easily be broken. (shrink)

In his article, Ismaili M’hamdi argues that a neutralist approach in public health policy might turn into a gap that separates citizens who endure preventable poor conditions from the state...

ABSTRACTIs the question ‘will you regret it if you do this?’ helpful when people face difficult life decisions, such as terminating a pregnancy if a disability is detected or deciding to become a parent? Despite the commonness of the question in daily life, several philosophers have argued lately against its usefulness. We reconstruct four arguments from recent literature on regret, transformative experience and the use of imagination in deliberation. After analysis of these arguments we conclude that the prospect of regret (...) remains a useful deliberative heuristic, provided four conditions are fulfilled. If the prospect of regret is arrived at via reflection on one’s values, in a non-coercive context, when well-informed about factual circumstances, and in a process of self-commitment, the question of what one will regret is a helpful device to get in touch with one’s deepest concerns that give reasons to act in a particular way. (shrink)

Should parents aim to make their children as normal as possible to increase their chances to “fit in”? Are neurological and mental health conditions a part of children’s identity and if so, should parents aim to remove or treat these? Should they aim to instill self-control in their children? Should prospective parents take steps to insure that, of all the children they could have, they choose the ones with the best likely start in life? -/- This volume explores all of (...) these questions and more. Against the background of recent findings and expected advances in neuroscience and genetics, the extent and limits of parental responsibility are increasingly unclear. Awareness of the effects of parental choices on children’s wellbeing, as well as evolving norms about the moral status of children, have further increased expectations from (prospective) parents to take up and act on their changing responsibilities. -/- The contributors discuss conceptual issues such as the meaning and sources of moral responsibility, normality, treatment, and identity. They also explore more practical issues such as how responsibility for children is practiced in Yoruba culture in Nigeria or how parents and health professionals in Belgium perceive the dilemmas generated by prenatal diagnosis. (shrink)

BackgroundPrevention of mother to child transmission of HIV remains a key public health priority in most developing countries. The provider Initiated Opt – Out Prenatal HIV Screening Approach, recommended by the World Health Organization lately has been adopted and translated into policy in most Sub – Saharan African countries. To better ascertain the ethical reasons for or against the use of this approach, we carried out a literature review of the ethics literature.MethodsPapers published in English and French Languages between 1990 (...) and 2015 from the following data bases were searched: Pubmed, Cochrane literature, Embase, Cinhal, Web of Science and Google Scholar. After screening from 302 identified relevant articles, 21 articles were retained for the critical review.DiscussionMost authors considered this approach ethically justifiable due to its potential benefits to the mother, foetus and society. The breaching of respect for autonomy was considered acceptable on the grounds of libertarian paternalism. Most authors considered the Opt - Out approach to be less stigmatizing than the Opt - In. The main arguments against the Opt - Out approach were: non respect of patient autonomy, informed consent becoming a meaningless concept and the HIV test becoming compulsory, risk of losing trust in health care providers, neglect of social and psychological implications of doing an HIV test, risk of aggravation of stigma if all tested patients are not properly cared for and neglect of sociocultural peculiarities.ConclusionsThe Opt – Out approach could be counterproductive in case gender sensitive issues within the various sociocultural representations are neglected, and actions to offer holistic care to all women who shall potentially test positive for HIV were not effectively ascertained. The Provider Initiated Opt – Out Prenatal HIV Screening option remains ethically acceptable, but deserves caution, active monitoring and evaluation within the translation of this approach into to practice. (shrink)

The ongoing COVID-19 pandemic has made explicit what many of us already knew and some of us are constantly made to feel: good health and the abilities of our bodies & minds1 are fluid and uncertain. We can only ever hold them precariously (Butler, 2004; Scully, 2014). In the end, we are all vulnerable beings. And, yet, vulnerability, perhaps especially in times of crisis, can never be fully universalised, nor is it distributed equally: the value and definition of what our (...) bodies & minds can do, what they mean, and how they are expected – and often pushed – to function, are intrinsically unstable, as they depend on the socio-cultural, political, and economic context. This is perfectly echoed by the title Rosi Braidotti (2020) gave to one of her recent articles on the ongoing COVID-19 crisis and the current posthuman predicament: ‘“We” Are in This Together, But We Are Not One and the Same’. (shrink)

Current and past pandemics have several aspects in common. It is expected that all members of society contribute to beat it. But it is also clear that the risks associated with the pandemic are different for different groups. This makes that appeals to solidarity based on technocratic risk calculations are only partially successful. Objective ‘risks of transmission’ may, for example, be trumped by risks of letting down people in need of help or by missing out certain opportunities in life. In (...) this paper we argue that a rapprochement of the insights of standpoint epistemology with pandemic science and pandemic policy making may be an important step toward making pandemic science more accurate and pandemic calls for solidarity more effective. (shrink)

Existing empirical research often do not explain which concepts about genetics underlie the assumption that genetic information is deemed important for donor-conceived offspring. This study focused on how donor-conceived individuals following anonymous sperm donation give meaning to and make sense of genes and genetics. Analysis is based on focus groups and interviews with adult donor-conceived offspring. Findings suggest that genes are part of their specific context of being donor-conceived but also play a role in daily life. Genes make sense on (...) an individual level and a relational level, both on parent-child as sibling-level. On an individual level they were perceived as (1) a biological starting package, (2) their own unique combination and (3) as a reference point. On a relational level, genes were seen as (1) “person-al”, (2) connecting and (3) locating individuals. This information is essential for those supporting/counseling donor conceived offspring and families as well as for policy-members. (shrink)

This open access collection brings together a team of leading scholars and rising stars to consider what experimental philosophy of medicine is and can be. While experimental philosophy of science is an established field, attempts to tackle issues in philosophy of medicine from an experimental angle are still surprisingly scarce. A team of interdisciplinary scholars demonstrate how we can make progress by integrating a variety of methods from experimental philosophy, including experiments, sociological surveys, simulations, as well as history and philosophy (...) of science, in order to yield meaningful results about the core questions in medicine. They focus on concepts central to philosophy of medicine and medical practice, such as death, pain, disease and disorder, advance directives, medical explanation, disability and informed consent. Presenting empirical findings and providing a crucial foundation for future work in this dynamic field, this collection explores new ways for philosophers to cooperate with scientists and reveals the value of these collaborations for both philosophy and medicine. The eBook editions of this book are available open access under a CC BY-NC-ND 4.0 licence on bloomsburycollections.com. Open access was funded by the European Research Council Starting Grant. (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)

Autism as a polysemic and dynamic phenomenonIn this paper we demonstrate how the dominant discourse about autism, that stresses biological explanations, has certain ethical implications. On the one hand, such discourse is exculpating. In autism’s history, genetic explanations helped removing the blame from so-called refrigerator mothers. In present-day diagnostic practice, the idea of having a biological diagnosis helps people and their parents see beyond blame and guilt. On the other hand, a simplistic approach to biology risks neglecting the experiences and (...) stories of autistic people in favour of finding causes and cures. In our own research we have noticed that narratives of autistic people explore an alternative autism discourse, one that demonstrate multiple meanings and dynamics of autism. We demonstrate, using the theories of Georges Canguilhem and the science of epigenetics, how dynamic models of life and mind offer the possibility to look at autism differently. Rather than seeing autistic people as people with fundamental flaws in their genes or software faults in their brains that have to be explained, autism appears as a phenomenon that exists in interaction with the context, as a meaningful reaction to the environment. (shrink)

There has been a spurt in both fundamental and translational research that examines the underlying mechanisms of the human microbiome in psychiatric disorders. The personalized and dynamic features of the human microbiome suggest the potential of its manipulation for precision psychiatry in ways to improve mental health and avoid disease. However, findings in the field of microbiome also raise philosophical and ethical questions. From a philosophical point of view, they may yet be another attempt at providing a biological cause for (...) phenomena that ultimately cannot be so easily localized. From an ethical point of view, it is relevant that the human gut microbiome comprises data on the individual’s lifestyle, disease history, previous medications, and mental health. Massive datasets of microbiome sequences are collected to facilitate comparative studies to identify specific links between the microbiome and mental health. Although this emerging research domain may show promise for psychiatric patients, it is surrounded by ethical challenges regarding patient privacy, health risks, effects on personal identity, and concerns about responsibility. This narrative overview displays the roles and advances of microbiome research in psychiatry and discusses the philosophical and ethical implications of microbiome big data and microbiome-based interventions for psychiatric patients. We also investigate whether these issues are really “new,” or “old wine in new bottles.”. (shrink)

Procreation in the face of an apocalypse: Some ethical considerations In the field of procreation ethics both Kantian and consequentialist arguments have been developed purporting to show the moral impermissibility of having (more than two) children. A survey of the most important arguments leaves us wondering whether one could derive general obligations or prohibitions from abstract principles and apply them to deeply personal decisions about whether or not to have children (and how many). At the same time it is undeniably (...) true that having children, however private the decision to procreate may feel, has an impact far beyond the private sphere. While we argue that the answer to the question whether or not to have a child cannot be derived from moral principles, we recognize that moral considerations about global and intergenerational justice do pertain to the question. We therefore develop an alternative framework for traditional Kantian and consequentialist approaches in procreation ethics, which we call holistic virtue ethics. (shrink)

This report is grounded in several social concepts: First, the primary goal of genetic testing should be to promote the well-being of the child. Second, the recognition that children are part of a network of family relationships supports an approach to potential conflicts that is not adversarial but, rather, emphasizes a deliberative process that seeks to promote the child's well-being within this context. Third, as children grow through successive stages of cognitive and moral development, parents and professionals should be attentive (...) to the child's increasing interest and ability to participate in decisions about his or her own welfare. (shrink)

The screening of in vitro embryos resulting from in vitro fertilization treatment for chromosomal abnormalities has as a primary aim to help patients achieve a successful pregnancy. Most IVF centers will not transfer aneuploid embryos, as they have an enhanced risk of leading to implantation failure and miscarriage. However, some aneuploidies, such as trisomy-21, can lead to viable pregnancies and to children with a variable health prognosis, and some prospective parents may request transfer of such embryos. I present two cases (...) where the testing for and detection of trisomy-21 can lead to conflicts between IVF professionals and patients and argue that in most such cases respect for choices of patients should prevail. (shrink)

Amsterdam University Press is a leading publisher of academic books, journals and textbooks in the Humanities and Social Sciences. Our aim is to make current research available to scholars, students, innovators, and the general public. AUP stands for scholarly excellence, global presence, and engagement with the international academic community.

Amsterdam University Press is a leading publisher of academic books, journals and textbooks in the Humanities and Social Sciences. Our aim is to make current research available to scholars, students, innovators, and the general public. AUP stands for scholarly excellence, global presence, and engagement with the international academic community.