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.

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.

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.

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.

Parents' views and experiences of the autism spectrum disorder diagnosis of their young child: a longitudinal interview study.

Parents are valuable stakeholders in research, clinical practice and policy development concerning autism spectrum disorder (ASD). Little is known, however, about how parents view and experience an ASD diagnosis. We investigated the evolution of parents' views and experiences of the ASD diagnosis before, right after and 12 months after their child was diagnosed. Seventeen Flemish parents waiting for their young child's diagnostic ASD assessment participated in a longitudinal study consisting of three in-depth interviews. They described their views and experiences concerning their child's ASD diagnosis at three separate moments: (T1) prior to a diagnostic ASD assessment; (T2) immediately after their final feedback session at the end of the assessment; and (T3) 12 months later. Interviews were digitally recorded, transcribed and analysed in Nvivo 11 according to the procedures of interpretative phenomenological analysis. We extracted three themes from the interview material throughout the parental journey: (T1) expecting certainty and exculpation; (T2) vulnerabilisation of the child; and (T3) pragmatic attitude and some disappointment. At T3, the parents overall had come to value the diagnosis because of two reasons: they were satisfied with their child's entitlement to ASD-related support at school, and with the diagnosis' impact on the child's relationships with parents and teachers. Many parents experienced their child with an ASD diagnosis as vulnerable, and themselves as acutely responsible for his development and future. Our findings may lead to a higher satisfaction with the clinical trajectory in both clinician and parents by inspiring a conversation between them about parents' evolving views, hopes and concerns related to their child's ASD diagnosis.

Pregnancy Termination in the Case of an Orofacial Cleft: An Investigation of the Concept of Reproductive Autonomy.

OBJECTIVE: To describe ethical approaches to the issue of pregnancy termination after prenatal detection of cleft lip ± palate. RESULTS: Gynecologists and cleft surgeons are sometimes confronted with the demand for a pregnancy termination after ultrasound detection of an isolated cleft lip/cleft palate. In this article, we discuss different ethical theories and principles that can be applied to the dilemma at hand. We formulate recommendations that will respect the right to autonomy of the pregnant woman and at the same time acknowledge that a termination of pregnancy for a cleft lip may in most cases not be the best option. CONCLUSION: The recognition of each person's right to reproductive autonomy also entails that clinicians should make sure that prospective parents are provided with up-to-date and relevant clinical information.

The many meanings of autism: conceptual and ethical reflections.

Autism is a polysemous concept. It is defined as a neurodevelopmental disorder that is diagnosed based on an assessment of behaviour and dysfunction. Autism also refers to a specific way of information or sensorial processing. For those diagnosed with autism, it is a real and shared experience. In this paper, I sketch the moral work that biological conceptions of autism perform. They help to conceptualize the diagnosis and associated challenges as real and they remove some of the blame from the diagnosed person and/or their parents. But such approaches also risk neglecting the role of behaviour as a meaningful reaction to experiences. In thinking about the ethics of autism research, diagnosis of autism, and autism care, the recent findings of epigenetics and systems biology may help us overcome the dichotomy between biology and psyche, and point the way to a more nuanced and ethical view. WHAT THIS PAPER ADDS: The meaning of 'autism' has different layers and as such autism is a polysemous concept. The lived experience of autistic people matters in research.

LOS MUCHOS SIGNIFICADOS DEL AUTISMO: REFLEXIONES CONCEPTUALES Y ÉTICAS: El autismo es un concepto polisémico. Se define como un trastorno del desarrollo neurológico que se diagnostica basándose en una evaluación y la disfunción del comportamiento. El autismo también se refiere a una forma específica de información o procesamiento sensorial. Para aquellos diagnosticados con autismo, es una experiencia real y compartida. En este artículo, bosquejo el trabajo moral que realizan las concepciones biológicas del autismo. Ayudan a conceptualizar el diagnóstico y los desafíos asociados como reales y eliminan parte de la culpa de la persona diagnosticada y / o de sus padres. Pero tales enfoques también corren el riesgo de descuidar el papel del comportamiento como una reacción significativa a las experiencias. Al pensar en la ética de la investigación del autismo, el diagnóstico del autismo y el cuidado del autismo, los hallazgos recientes de la epigenética y la biología de sistemas pueden ayudarnos a superar la dicotomía entre biología y psique, y señalar el camino hacia una visión más matizada y ética.

OS MUITOS SIGNIFICADOS DE AUTISMO: REFLEXÕES CONCEITUAIS E ÉTICAS: Autismo é um conceito polissêmico. É definido como um transtorno neurodesenvolvimental diagnosticado com base em uma avaliação do comportamento e disfunção. O autismo também se refere a uma forma específica de processamento sensorial ou de informação. Para aqueles diagnosticados com autismo, é uma experiência real e compartilhada. Neste artigo, eu delineio o trabalho moral que as concepções biológicas do autismo desempenham. Elas ajudam a conceitualizar o diagnóstico e os reais desafios associados, e removem parte da culpa da pessoa com o diagnóstico e/ou seus pais. Porém, tais abordagens também correm o risco de negligenciar o papel do comportamento como uma reação significativa às experiências. Pensando sobre a ética em pesquisas, diagnóstico e tratamento do autismo, os achados recentes sobre epigenética e biologia dos sistemas podem nos ajudar a superar a dicotomia entre biologia e psique, e apontar o caminho para uma visão mais apurada e ética.

Conceptualizing neurodevelopmental disorders as networks: Promises and challenges.

The target article by Borsboom et al. proposes network models as an alternative to reductionist approaches in the analysis of mental disorders, using mood disorders such as depression and anxiety as examples. We ask how this framework can be applied to neurodevelopmental disorders such as autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD). Specifically, we raise a number of promises and challenges when conceptualizing neurodevelopmental disorders as networks.

Recommendations for collaborative paediatric research including biobanking in Europe: a Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) initiative.

Innovative research in childhood rheumatic diseases mandates international collaborations. However, researchers struggle with significant regulatory heterogeneity; an enabling European Union (EU)-wide framework is missing. The aims of the study were to systematically review the evidence for best practice and to establish recommendations for collaborative research. The Paediatric Rheumatology European Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) project enabled a scoping review and expert discussion, which then informed the systematic literature review. Published evidence was synthesised; recommendations were drafted. An iterative review process and consultations with Ethics Committees and European experts for ethical and legal aspects of paediatric research refined the recommendations. SHARE experts and patient representatives vetted the proposed recommendations at a consensus meeting using Nominal Group Technique. Agreement of 80% was mandatory for inclusion. The systematic literature review returned 1319 records. A total of 223 full-text publications plus 22 international normative documents were reviewed; 85 publications and 16 normative documents were included. A total of 21 recommendations were established including general principles (1-3), ethics (4-7), paediatric principles (8 and 9), consent to paediatric research (10-14), paediatric databank and biobank (15 and 16), sharing of data and samples (17-19), and commercialisation and third parties (20 and 21). The refined recommendations resulted in an agreement of >80% for all recommendations. The SHARE initiative established the first recommendations for Paediatric Rheumatology collaborative research across borders in Europe. These provide strong support for an urgently needed European framework and evidence-based guidance for its implementation. Such changes will promote research in children with rheumatic diseases.

Chromosome Screening Using Noninvasive Prenatal Testing Beyond Trisomy-21: What to Screen for and Why It Matters.

With the new and highly accurate noninvasive prenatal test (NIPT), 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.

The ethics of complexity. Genetics and autism, a literature review.

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.

A leap of faith? An interview study with professionals on the use of mitochondrial replacement to avoid transfer of mitochondrial diseases.

STUDY QUESTION: What are the opinions of professionals in the field of genetics, reproductive science and metabolic diseases on the development of mitochondrial replacement technologies to be used in the context of medically assisted reproduction? SUMMARY ANSWER: Although concerns regarding safety remain, interviewees supported the development of nuclear transfer techniques to help women who are at risk of transferring a mitochondrial DNA disease to their offspring conceive a genetically related child. WHAT IS KNOWN ALREADY: Technological developments in the field of nuclear transfer have sparked new interest in the debate on the acceptability of the use of donor oocytes to prevent the transmission of mitochondrial diseases. For example, in the UK, extensive public consultations have been done to investigate whether such techniques would allow the passing of a law that involves making changes to a human oocyte or embryo before transfer to a woman's body. Until now, continental European countries seem to await the outcome of the British debate before themselves considering the arguments for and against this technology. STUDY DESIGN, SIZE, AND DURATION: We interviewed 12 professionals from Belgium and The Netherlands. PARTICIPANTS/MATERIALS, SETTING, AND METHODS: We conducted 12 interviews with fertility specialists, scientists, clinical geneticists, a pediatrician specialized in metabolic diseases and a specialist in metabolic diseases. The profiles of the interviewees varied but all had experience with mitochondrial diseases, either in treating patients or in providing counseling to patients or to prospective parents. The interviews were conducted face-to-face and took 30-45 min. The language of the interviews was Dutch. We analyzed the transcript of these interviews using QSR NVIVO 10 software to extract themes and categories. MAIN RESULTS AND THE ROLE OF CHANCE: This study has shown that, although amongst the professionals we interviewed there was support for the development and deployment of nuclear transfer, this support does not necessarily correspond to uniform opinions about the importance of having a genetically own child or the contribution of mitochondrial DNA to essential characteristics of an individual. LIMITATIONS, REASONS FOR CAUTION: In translating the quotes from Dutch to English some of the linguistic nuances may have been lost. We only interviewed 12 individuals, in two countries, whose view may not be representative of existing values and opinions that may be held by professionals worldwide on this matter. To further explore the issue at hand, a subsequent investigation of the opinions of people affected by mitochondrial diseases and of the general public is necessary. WIDER IMPLICATIONS OF THE FINDINGS: With this study we have demonstrated there is in principle support for the nuclear transfer technique from Dutch and Belgian professionals. Further research, both scientific and ethical, is needed to define the modalities of its possible introduction in the fertility clinic. STUDY FUNDING/COMPETING INTERESTS: This research was funded by GROW, School for Oncology and Developmental Biology, The Netherlands. The authors declare no conflict of interest. TRIAL REGISTRATION NUMBER: N/A.

Ethical issues surrounding the provider initiated opt--Out prenatal HIV screening practice in Sub-Saharan Africa: a literature review.

BACKGROUND: Prevention 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 (WHO) 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. METHODS: Papers 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. DISCUSSION: Most authors considered this approach ethically justifiable due to its potential benefits to the mother, foetus and society (Beneficence). 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. CONCLUSIONS: The 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.

To transfer or not to transfer: the case of comprehensive chromosome screening of the in vitro embryo.

The screening of in vitro embryos resulting from in vitro fertilization (IVF) treatment for chromosomal abnormalities (aneuploidies) 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.

Preserving children's fertility: two tales about children's right to an open future and the margins of parental obligations.

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.

In vitro screening of embryos by whole-genome sequencing: now, in the future or never?

STUDY QUESTION: What are the analytical and clinical validity and the clinical utility of in vitro screening of embryos by whole-genome sequencing? SUMMARY ANSWER: At present there are still many limitations in terms of analytical and clinical validity and utility and many ethical questions remain. WHAT IS KNOWN ALREADY: Whole-genome sequencing of IVF/ICSI embryos is technically possible. Many loss-of-function mutations exist in the general population without serious effects on the phenotype of the individual. Moreover, annotations of genes and the reference genome are still not 100% correct. STUDY DESIGN, SIZE, DURATION: We used publicly available samples from the 1000 Genomes project and Complete Genomics, together with 42 samples from in-house research samples of parents from trios to investigate the presence of loss-of-function mutations in healthy individuals. PARTICIPANTS/MATERIALS, SETTING, METHODS: In the samples, we looked for mutations in genes that are associated with a selection of severe Mendelian disorders with a known molecular basis. We looked for mutations predicted to be damaging by PolyPhen and SIFT and for mutations annotated as disease causing in Human Genome Mutation Database (HGMD). MAIN RESULTS AND THE ROLE OF CHANCE: More than 40% of individuals who can be considered healthy have mutations that are predicted to be damaging in genes associated with severe Mendelian disorders or are annotated as disease causing. LIMITATIONS, REASONS FOR CAUTION: The analysis relies on current knowledge and databases are continuously updated to reflect our increasing knowledge about the genome. In the process of our analysis several updates were already made. WIDER IMPLICATIONS OF THE FINDINGS: At this moment it is not advisable to use whole-genome sequencing as a tool to set up health profiles to select embryos for transfer. We also raise some ethical questions that have to be addressed before this technology can be used for embryo selection. TRIAL REGISTRATION NUMBER: N/A.

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.