If Marc is Suzanne's father, does it follow that Suzanne is Marc's child? An experimental philosophy study in reproductive ethics.

In this paper, we report the results from an experimental reproductive ethics study exploring questions about reproduction and parenthood. The main finding in our study is that, while we may assume that everyone understands these concepts and their relationship in the same way, this assumption may be unwarranted. For example, we may assume that if 'x is y's father', it follows that 'y is x's child'. However, the participants in our study did not necessarily agree that it does follow. This means, at the very least, that we need to make sure all parties in a debate have the same relationships in mind when talking about reproduction and parenthood. Moreover, it gives us reason to explore more carefully the conditions which support or undermine the connections between these concepts. This cannot come from purely theoretical reasoning, nor from empirical research alone, but from the alliance between the two.

The Value of Interdisciplinary Collaboration in Human Geography and Bioethics.

Human geography and bioethics both take pride in their interdisciplinary approaches. Relatively little cross-pollination has occurred between human geography and bioethics. This paper takes three cases to highlight the generative potentials of both disciplines, dedicating time and space to learning from each other. Through doing so, we highlight these potentials by focusing on how navigating public spaces subverts the expected uses of particular spaces. We demonstrate that these are entangled with questions of responsibility that both geographers and bioethicists might find helpful. Human geographers and bioethicists can, and should, look for non-naïve ways to care for space, and we hope for this paper to be an example of where to start in the collaborative future of our disciplines.

Beyond the Organism versus Machine Dichotomy: A Review of Ethical Concerns in Synthetic Biology.

Synthetic Biology (SynBio) is a technology that brings new possibilities and benefits, as well as new ethical concerns. We have performed a systematic review and thematic analysis of papers that deal with the possible ethical and social issues surrounding SynBio. We found that articles mention deontological concerns related to tinkering with life and more consequentialist matters related to biosafety and biosecurity. At the same time, justice aspects, such as socioeconomic and environmental impacts, are far less mentioned. Moreover, there is a lack of systematic study of the ethical issues that SynBio researchers in the lab encounter on a day-to-day basis.

The Earlier, the Better? An In-Depth Interview Study on the Ethics of Early Detection with Parents of Children at an Elevated Likelihood for Autism.

Autism is increasingly viewed as an expression of neurodiversity deserving accommodation, rather than merely as a disorder in need of remediation or even prevention. This reconceptualization has inspired calls to broaden the ethical debate on early autism care beyond matters of efficient screenings and effective interventions. We conducted 14 in-depth interviews with 26 parents of infants at an increased likelihood for autism (siblings, preterms and children with persistent feeding difficulties) to understand which benefits and risks these parents see for the implementation of a systematic, early autism detection program in our region. With this study, we aim to contribute empirically to the ethical debate on good and just early autism care in the age of neurodiversity. Data were analyzed according to the QUAGOL-methodology. Three main themes emerged from our analysis. In their evaluation of early autism detection, parents discussed how a diagnosis helps gain a different perspective fostering understanding and recognition for both child and parent. Second, a diagnosis supports parents in adjusting their parenting practices, to justify this deviation from "normal" parenting and to strive for such adjusted environments beyond the nuclear family. Third, an autism diagnosis induces ambiguities parents need to navigate, involving questions on whether and when to mobilize the diagnostic label and which language to use to talk about autism. We discuss the complex position of parents of a (potentially) autistic child in terms of moving back and forth across the ab/normal binary and describe implications for the ethical debate on early autism detection.

Personal Genomes in Practice: Exploring Citizen and Healthcare Professionals' Perspectives on Personalized Genomic Medicine and Personal Health Data Spaces Using a Mixed-Methods Design.

Ongoing health challenges, such as the increased global burden of chronic disease, are increasingly answered by calls for personalized approaches to healthcare. Genomic medicine, a vital component of these personalization strategies, is applied in risk assessment, prevention, prognostication, and therapeutic targeting. However, several practical, ethical, and technological challenges remain. Across Europe, Personal Health Data Space (PHDS) projects are under development aiming to establish patient-centered, interoperable data ecosystems balancing data access, control, and use for individual citizens to complement the research and commercial focus of the European Health Data Space provisions. The current study explores healthcare users' and health care professionals' perspectives on personalized genomic medicine and PHDS solutions, in casu the Personal Genetic Locker (PGL). A mixed-methods design was used, including surveys, interviews, and focus groups. Several meta-themes were generated from the data: (i) participants were interested in genomic information; (ii) participants valued data control, robust infrastructure, and sharing data with non-commercial stakeholders; (iii) autonomy was a central concern for all participants; (iv) institutional and interpersonal trust were highly significant for genomic medicine; and (v) participants encouraged the implementation of PHDSs since PHDSs were thought to promote the use of genomic data and enhance patients' control over their data. To conclude, we formulated several facilitators to implement genomic medicine in healthcare based on the perspectives of a diverse set of stakeholders.

Causes or Cures: What makes us think of attention issues as disorders?

Are attention issues disorders or not? Philosophers of medicine have tried to address this question by looking for properties that distinguish disorders from non-disorders. Such properties include deviation of a statistical norm, a loss of function or experienced suffering. However, attempts at such conceptual analysis have not led to a consensus on the necessary and sufficient conditions for the application of the concept of disorder. Recently, philosophers have proposed an experimental approach to investigate in which circumstances people think a specific concept is applicable. Here we present a quantitative vignette study investigating whether disorder attribution depends on the perceived cause and the perceived type of treatment for an attention problem. The results of our study indicate that the attribution of a disorder decreased when the attention problem was understood as caused by bullying (social environmental cause) or by an accident (non-social environmental cause) rather than a genetic cause. When prescribed a pill, attention problems were considered a disorder to a larger extent than when the child was prescribed an environmental treatment. Our study also suggests that whereas successful environmental treatments will not necessarily decrease the disorder attribution, successful pharmacological treatments will decrease the likelihood that a person is thought to still suffer from a disorder after receiving the treatment.

Being, Knowing, and Doing: Importing Theoretical Toolboxes for Autism Studies.

The aim of this article was to think with and elaborate on theories developed outside of autism research and the autistic community, and through this support the production of new autistic-led theories: theories and concepts based on autistic people's own embodied experiences and the social worlds we inhabit. The article consists of three different sections all of part of the overall umbrella, Being, knowing, and doing: Importing theoretical toolboxes for autism studies. In each section, we import useful concepts from elsewhere and tailor them to autism studies. Throughout, we mingle our own autoethnographic accounts and shared discourse in relation to research accounts and theories. Illustrating being, we explore and discuss the possibilities of critical realism in autism studies. Illustrating knowing, we explore and discuss the possibilities of standpoint theory in autism studies. Finally, illustrating doing, we explore and discuss the possibilities of neurocosmopolitics including epistemic (in)justice in autism studies. Our proposal here is for an epistemic shift toward neurodiverse collaboration. We are inviting nonautistic people to work with, not on, us, aiming at to make autism research more ethical, breaking down bureaucratic structures, and questioning poor theory and shoddy methodology. Acknowledging intersecting axes of oppression in which an individual seeks to renegotiate and reimagine what it means to belong also means to understand what needs changing in society, as it is and how we might do things differently.

Why is this topic important: People are starting to realize that good autism research should include autistic people (as researchers, participants, co-designers, for example), which means working in neurodiverse teams (teams that include autistic and non-autistic people). So far, a lot of ideas that researchers have had about autistic people have said that they (we) are impaired, which is hurtful and can make it hard to work together. If we are going to create better research, and better spaces to do research in, we need to find new ideas and ways to work. It is important that these new ideas are based on how autistic people see themselves and the world around them (us). What is the purpose of this article?: In this article, we (a group of neurodivergent researchers) look at how we can apply ideas about how knowledge is made, how we use knowledge, and how knowledge impacts people, to creating better autism research. We use ideas from philosophy and think about how they can help us to share our experiences with each other. What do the authors suggest?: We start by exploring how a theory called 'critical realism' can be used to understand differing autistic experiences, by taking into account how our identities and experiences are shaped by different social environments and affect we think about the world. Next we apply standpoint theory, which looks at the importance of acknowledging the impact of a researchers own identity in research. Finally, we explore 'neurocosmopolitanism', which hopes for a future where our differences can be celebrated and accepted. We also think about 'epistemic injustice', where research that is done 'on' instead of 'with' leads to inaccurate or harmful knowledge about us. We argue that by applying ideas such as these to autism studies, we can create spaces where fair and just autism research is created. We argue that these ideas will help both autistic and non-autistic researchers to understand each other better, because they are based on what it is like to be autistic, and not what being autistic looks like to non-autistic people. What do the authors think should happen in the future?: The authors think that more researchers should think about what they say about autistic people. Autistic people should be recognized as the people with the most knowledge about what it is like to be autistic. We think that this will create a kinder way of working for both autistic and non-autistic people and research will be more useful and ethical. How will this study help autistic people now and in future?: This research will help autistic people in two ways. First, it will make sure that autistic people's ideas and experiences will be taken more seriously by non-autistic colleagues. Second, it will lead to better autism research, benefitting autistic people who are not just researchers. This is because the ideas will be more closely related to the experiences of autistic people, instead of outside interpretations of what it is like to be autistic.

Cutting our own keys: New possibilities of neurodivergent storying in research.

LAY ABSTRACT: A lot of people who do research are also neurodivergent (such as being autistic or attention deficit hyperactivity disorder), but neurodivergent people do not always feel welcome in research spaces which are often shaped around neurotypical people. Some neurotypical researchers lack confidence in talking to neurodivergent people, and others feel like neurodivergent people might not be able to do good research about other people who are like them without being biased. We think it is important that all researchers are able to work well together, regardless of whether they are neurotypical, autistic, or attention deficit hyperactivity disorder (or any other neurotype) - in truly 'neurodiverse' teams. In this article we talk about how to create better spaces for all researchers, where we feel valued for who we are and take each others' needs into account. We do this using some approaches from other areas of research and talking about how they relate to our personal experiences of being neurodivergent researchers with our own personal stories. This article adds to a growing work on how we can work with people who are different from us, in more respectful and kind ways.

Philosophy of Science Can Prevent Manslaughter.

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.

Developmental diversity: Putting the development back into research about developmental conditions.

The dominant discourse surrounding neurodevelopmental conditions such as autism and ADHD emphasizes biological explanations. Neurodevelopmental conditions are conceived as different types of brains, the result of different types of genes. This way of thinking is present both in medical research and in clinical practice. Indeed, it is widely acknowledged that the idea of having a biological diagnosis helps people see beyond blame and guilt. It aids acceptance. However, simplistic approaches to biology risks neglecting the experiences and stories of autistic people in favor of finding etiological causes. At the same time, there is growing awareness that risks, functioning, and resilience are not solely defined by genes and brains but have a cultural and experiential component as well. Furthermore, atypical cognitive trajectories are not straightforwardly associated with poor outcomes. In this paper we describe the concept of developmental diversity as an alternative to more categorical approaches to neurodevelopmental conditions. We explore how dynamic models of life offer possibilities to look at neurodevelopmental conditions 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. We explore what it would mean for research to go from a diagnosis-based approach to a developmental diversity approach that will define wellbeing and functioning in a more granular way across developmental trajectories. We argue that this would mean incorporating lived experiences into biological research and going beyond genes-environment dichotomies. Next to yielding a more complete picture on the phenomenon of autism, we describe how an approach that takes developmental diversity as a starting point offers a new way to look at existing challenges of autism research, such as how to deal with the significant overlap between diagnosis. Our hypothesis is that thinking with developmental diversity rather than categorical difference both represents an opportunity for a more inclusive society, and fundamentally can alter the way we perform research. As such, it is in line with requests of neurodiversity and disability movements.

Pandemic Risk and Standpoint Epistemology: A Matter of Solidarity.

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.

Microbiome in Precision Psychiatry: An Overview of the Ethical Challenges Regarding Microbiome Big Data and Microbiome-Based Interventions.

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."

Ethics of returning children's individual research findings: from principles to practice.

Little ethical recommendations on returning children's individual research findings are available for researchers in behavioral sciences, especially when compared to genetic research. Anecdotic evidence suggests that since parents are often interested in their child's individual research findings, researchers tend to offer this information as a form of compensation for research participation. Despite good intentions, these practices are not without potential harmful consequences for children. We were confronted with these difficulties and with the paucity of available guidance on this topic, being involved in a longitudinal, infant development study, i.e. tracking infants at risk for autism (TIARA). First, we review current ethical recommendations and discuss their limitations in the light of the TIARA study. Second, we will suggest to revise these recommendations, by identifying and applying the relevant bioethical principles and concepts at hand. Third, as an example of practical implementation, the adopted 'return of research findings'-policy for the TIARA-study is presented. The principles and concepts we engage with are the ancillary care responsibilities of the researcher, non-maleficence and beneficence, the right to an open future of the child, and the avoidance of therapeutic misconception. Ultimately, we present the concrete return of research findings policy implemented in the TIARA-study. Here, we suggest restricting the systematic return of children's individual research findings to cases where findings are considered clinically significant and actionable for the child. We discuss the broader implications for designing and conducting research in behavioral sciences with children.

Going Beyond the Catch-22 of Autism Diagnosis and Research. The Moral Implications of (Not) Asking "What Is Autism?"

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.

Parents' multi-layered expectations when requesting an Autism Spectrum Disorder assessment of their young child: an in-depth interview study.

BACKGROUND: Parents are valued stakeholders in research, clinical practice and policy development concerning autism spectrum disorder (ASD). However, little is known about what drives and moves parents besides their obvious worries and help request when they ask for a diagnostic ASD assessment of their child. METHODS: Seventeen Flemish parents of 11 young children participated in a longitudinal study consisting of three in-depth interviews before and after their child's diagnostic ASD assessment. Data were analysed in Nvivo 11 according to the procedures of Interpretative Phenomenological Analysis. RESULTS: In this paper we report the results of the first series of interviews which were conducted after parents had asked for an ASD assessment of their young child, and before this assessment started. The pre-assessment experiences of the parents were dominated by the anticipation of various implications of an ASD diagnosis, comprising both positive and negative expectations. The theme of positive expectations consisted of two equally prominent subthemes: treatment-related implications but also expectations pertaining to their psychological and relational experiences. CONCLUSIONS: This study suggests important issues for clinicians to bear in mind during a consultation with parents who request an ASD assessment of their young child. We argue that attending to and communicating about parents' expectations prior to their child's ASD assessment may help clinicians to better understand parents' requests for help, and to address their needs more effectively.