Kristien Hens

Kristien Hens
University of Antwerp | UA · Department of Philosophy

Ph.D.

About

141
Publications
27,772
Reads
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1,347
Citations
Introduction
Studying the ethical aspects of the (epi-)genetics of neurological development and neurodiversity, specifically in the context of reproduction.
Additional affiliations
July 2015 - present
University of Antwerp
Position
  • PostDoc Position
January 2012 - present
Maastricht University
June 2012 - present
Maastricht University
Position
  • GRGE
Education
September 2007 - December 2010
KU Leuven
Field of study
  • Ph.D. Biomedical Sciences
September 2005 - July 2007
KU Leuven
Field of study
  • Applied Ethics
September 2004 - July 2005
KU Leuven
Field of study
  • Certificate in Philosophy

Publications

Publications (141)
Article
Full-text available
Introduction Advancing research and support for neurologically diverse populations requires novel data harmonisation methods that are capable of aligning with contemporary approaches to understanding health and disability. Objectives We present the International Classification of Functioning, Disability and Health (ICF) as a conceptual framework t...
Article
Full-text available
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...
Preprint
Full-text available
Big data approaches in mental health research hold great promise to advance research and support for neurologically diverse populations. The Risk, Resilience and Developmental Diversity in Mental Health (R2D2-MH) project moves from risk-focused studies toward understanding and promoting resilience, and from a diagnosis-based approach to a developme...
Article
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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-de...
Article
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Despite facing more adversity and being at a greater risk of poor long-term outcomes, many neurodivergent individuals thrive and have a “good life” according to subjective and objective standards. Research and clinical practice have most often focused on risk and negative outcomes in neurodivergent individuals. In comparison, very little attention...
Article
Pregnancy termination in case of an orofacial cleft: investigation of the concept of reproductive autonomy Gynaecologists and cleft surgeons are sometimes confronted with the demand for pregnancy termination after ultrasound detection of an isolated cleft lip/palate. In this article, ethical approaches to this issue are described. Furthermore, it i...
Article
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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 acknowl...
Preprint
Full-text available
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-de...
Article
Full-text available
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 especi...
Article
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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’ [2] account of biomedical explanations is investigated in a case of philosophical interest...
Article
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,...
Article
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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 for...
Book
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What does it mean to say that someone is autistic? Dynamics of Autism is an exploration of this question and many more. In this thoughtful, wide-ranging book, Kristien Hens examines a number of perspectives on autism, including psychiatric, biological, and philosophical, to consider different ways of thinking about autism, as well as its meanings t...
Preprint
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Call for papers — Tijdschrift voor Genderstudies/Journal of Gender Studies Special Issue: Dis/abling Gender Deadline abstracts: 1st of May 2021. For more information, see the PDF.
Article
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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 a...
Article
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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 1...
Article
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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...
Article
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https://rdcu.be/b5I5n 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 mo...
Article
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Autism Spectrum Condition (ASC) 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...
Article
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...
Preprint
Full-text available
Background Parents are valued stakeholders in research, clinical practice and policy development concerning autism spectrum disorder (ASD). Little is known, however, about what drives and moves parents when they request a diagnostic ASD assessment of their child. Methods Seventeen Flemish parents of 11 young children participated in a longitudinal...
Preprint
Full-text available
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...
Preprint
Full-text available
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...
Preprint
Full-text available
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 y...
Article
Background: The fact that environmental factors and lifestyle play a role in mental health is well known. In the last decades more research has gone into the link between environment and genetics: epigenetics has shown us the molecular link between these two, and the influence of the microbiome on mental health has demonstrated the importance of f...
Article
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BACKGROUND After decades of research and clinical experience, autism spectrum disorder (ASD) turns out to be heterogeneous in every sense, including phenotype and etiology. How is this heterogeneous view translated in information that is useful and significant to parents and clinicians? AIM: To formulate recommendations with regard to clinical ASD...
Article
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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 oblig...
Article
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The increasing availability of high throughput proteomics data provides us with opportunities as well as posing new ethical challenges regarding data privacy and re-identifiability of participants. Moreover, the fact that proteomics represents a level between the genotype and the phenotype further exacerbates the situation, introducing dilemmas rel...
Article
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The conceptualisation of Autism Spectrum Disorder (henceforth ASD) in stakeholders is rarely explicitly addressed in studies investigating how parents and clinicians view an ASD diagnosis. Often in biomedical research on ASD, the participants' conceptualisation of ASD is not mentioned and therefore, it seems to be implicitly assumed that they share...
Article
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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...
Article
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Introduction: Clinicians working with children with autism spectrum disorder (ASD) occupy an important position between parents and the wide-ranging research findings. However, it is not widely known how clinicians view and experience ASD in children, even though their perspective has been shown to significantly influence their work. Material and m...
Article
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 hyperac...
Article
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That parents should love their children is generally considered self-evident. But what this love should entail is still a topic of discussion. In this paper, we demonstrate that there is currently a trend towards biologizing and even neurologizing parental love-that is, the claim that loving parental relationships are required for the brain develop...
Article
Objective: Comprehensive chromosome examination is a promising approach to Preimplantation Genetic Testing (PGT). Next to testing of specific chromosomes, such as in the case of reduced fertility due to chromosomal translocations, it allows testing of all chromosomes. Hence it potentially reduces the time to pregnancy and the risk of miscarriage....
Article
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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 g...
Article
In 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...
Article
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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 treat...
Article
Full-text available
Clinicians are significant translators and interpreters towards parents of the abundant literature on autism spectrum disorder (ASD). However, how clinicians experience and view ASD and an ASD diagnosis is not well known. Sixteen physicians working with young children with a (presumed) diagnosis of ASD participated in a semi-structured interview. T...
Chapter
What is autism? With this study, we have chosen to open up the space of interpretation by using the spoken words of our respondents. We used a phenomenological approach by asking questions regarding (the interpretation of) personal experiences. In drawing up the questions as in the analysis of the theoretical explanatory models of autism, we have g...
Chapter
This chapter explores the experiences of our interviewees with respect to their own being ‘different’. How did they notice they were not the same as others? How do they think they deviate from the norm? And what do they think and how do they feel about that? This chapter provides us with numerous stories from people who have had first-hand experien...
Chapter
This chapter deals with the question how one should relate to the diagnosis once it is made. Is it suddenly an explanation for all the problems you had in life? Does this mean the quest for recognition is finally over? Can everything you experience and have experienced now be explained by turning to the diagnosis? Can the diagnosis help you to thin...
Chapter
This chapter explores the different tests that are available to test for autism and lets the respondents explain what their experience was with these tests. Some respondents were very happy with the tests, others were more sceptical. Many respondents have already had different diagnoses before their autism diagnosis (ADHD, NLD, MCDD, borderline, de...
Chapter
Many interviewees have always known that they were different and have certainly had their share of misery due to misunderstandings and not fitting in. Some already had their suspicions that they might have autism; for others, the diagnosis came as a surprise. The respondents explain how living in modern-day society is hard for them and sometimes ve...
Chapter
The popular assumption that autistics are supposedly unable to reflect on themselves is clearly refuted by this book and the testimonies of the respondents. This chapter focuses on this (in)ability to self-reflect and shows us how the respondents reflect on themselves, and how varied and subtle these reflections are. Many of these reflections deal...
Chapter
Our participants express an inherent ambiguity with respect to the diagnosis of autism. On the one hand, it offers an explanation and a possible way out of the existing problems. On the other hand, it is impossible to completely coincide with a phenomenon that is as heterogeneous as autism. The danger exists that you will regard yourself solely as...
Chapter
This chapter explores the perspectives people have on a future living with a diagnosis. A diagnosis implies a ‘dysfunctioning’, a label, a deficit, an ‘abnormality’. How to think about the balance between finding recognition in the diagnosis on the one hand, but having to deal with the stigma society connects to the diagnosis on the other hand? Sho...
Book
‘This is possibly the best book on autism research this year. It is a very rich book, which is worthwhile for those who are prepared to leave the path of the instrumental and choose deeper reflection. It is a pioneer in the field of free and equal cooperation between academia and lived experience. There are not many books where the authors are sinc...
Article
Background: Most of the research in autism focuses on finding biological explanations. Far less is known about what it means to live with the diagnosis. AIM: To describe the impact of diagnosing autism during adulthood. METHOD: We interviewed 22 adults diagnosed with autism in order to understand how people experience and evaluate themselves, how...
Article
A recent patent granted for methods for diagnosing autism spectrum disorder (ASD) raises several ethical concerns beyond the fundamental question of whether genomic sequences are patentable, as it suggests that genetic testing can provide a diagnosis of ASD even before behavioural symptoms present.
Chapter
Full-text available
Today, more people are diagnosed with a psychiatric condition than ever before. Classifying a certain type of behavior or a pattern of ‘otherness’ under a specific diagnostic label has as a result that the classification itself shifts and expands, and also alters how people view themselves. This is what Ian Hacking called ‘the looping effect’. With...
Chapter
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In recent years, there has been growing concern over the perceived tendency of women to postpone childbearing. In this chapter, we show that some of the responses to the phenomenon of postponed reproduction are deeply problematic. The question of whether it is accurate to construe later motherhood as postponement at all is far from clear. Moreover,...
Article
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With the new and highly accurate non-invasive 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 sub-chromosomal abnormality is added to the screening pa...
Article
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Popular scientific publications regularly have articles with headlines suggesting that 'autism is hereditary' or that the 'risk for developing autism' is mostly caused by genetics (see BioNews 920). Consequently, there is the suggestion that associating certain genes with certain subtypes of autism will pave the way for future medicines (see BioNew...
Article
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Is the question ‘will you regret it if you do (not 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 argumen...
Article
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 collabo...
Presentation
This symposium explores the lived experiences of individuals with the diagnosis of autism spectrum disorder (ASD) and their environments to generate new insights on clinical and ethical topics. Starting from an “inside out” instead of an “outside in” perspective, we suggest new understandings of social problems and co-occurring conditions in adults...
Article
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In this paper I review some of the discussions on procreative beneficence and procreative autonomy in the context of advanced 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 offspri...
Chapter
Epigenetics is a discipline that aims to demonstrate how environmental factors influence organisms on a molecular level by explaining how these factors can affect the expression of genes. Epigenetic changes are assumed to be heritable and reversible, thus challenging the central dogma of genetics. This dogma states that genes are transcribed and tr...
Chapter
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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 be...
Book
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...
Article
The search for genes that can explain the development of autism is ongoing. At the same time, genetic counselling and genetic testing can be offered to families with a child diagnosed with autism. However, given the complexity of autism, both with respect to its aetiology as well as with respect to its heterogeneity, such genetic counselling and te...
Article
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...
Article
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De plus en plus d'enfants sont diagnostiqués autistes depuis les années nonante du siècle dernier. Par ailleurs, l'intérêt porté à une possible cause biologique de l'au-tisme ne cesse de croître. Les recherches en cours pour identifier les gènes de l'autisme sont nombreuses. Historiquement, nous pouvons expliquer cet intérêt pour une cause génétiqu...
Article
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Sinds de jaren negentig van vorige eeuw krijgen meer en meer kinderen de diagnose autisme. Daarnaast is er een groeiende belangstelling voor een mogelijke biologische oorzaak van autisme. De zoektocht naar autismegenen is volop aan de gang. Historisch kunnen we deze interesse in een genetische oorzaak voor autisme verklaren door te verwijzen naar h...
Chapter
Human tissue is an invaluable resource for researchers worldwide. Moreover, the storage of DNA profiles in forensic databases can aid the fast resolution of crimes. Biobanks are repositories of such human tissue and can have a strategic importance for genetic research, clinical care, and future treatments. However, storage and use of biological spe...
Article
Background: Given the wide variety of the phenotype, the uncertain genetic origins and the discussions surrounding the status of autism itself, genetic research on autism genes generates specific ethical questions that are not completely analogous to the ethical issues of genetic research in general. Method: In order to map ethical issues surrou...
Article
Full-text available
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 a...
Article
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Objective: Family history (FH) in Preventive Primary Pediatric Care is to identify children at risk for complex diseases and provide personal preventive strategies. This study was to assess parents' opinion on FH collection. Methods: Semi-structured interviews were conducted. Among issues addressed were: former experiences with FH, knowledge abo...
Chapter
Human tissue is an invaluable resource for researchers worldwide. Moreover, the storage of DNA profiles in forensic databases can aid the fast resolution of crimes. Biobanks are repositories of such human tissue and can have a strategic importance for genetic research, clinical care, and future treatments. However, storage and use of biological spe...
Article
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? Although concerns regarding safety remain, interviewees supported the development of nuclear transfer techniques to he...
Chapter
Preimplantation genetic screening (PGS) for chromosomal aneuploidies is an accessory technology to IVF+ICSI, as almost all aneuploid embryos will give rise to implantation failure or pregnancy loss. PGS for aneuploidy can also be applied in the context of preimplantation genetic diagnosis (PGD), where patients are mostly fertile, but undergo IVF an...
Article
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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...
Article
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What are the analytical and clinical validity and the clinical utility of in vitro screening of embryos by whole-genome sequencing? At present there are still many limitations in terms of analytical and clinical validity and utility and many ethical questions remain. Whole-genome sequencing of IVF/ICSI embryos is technically possible. Many loss-of-...
Article
Introduction: Many childhood-onset diseases and developmental disorders have a strong genetic basis. However, up till now, the knowledge of this genetic component within multifactorial diseases is not frequently used in paediatric practice. A good family history collection can facilitate the link between the present paediatric practice and the adva...
Article
AimMany child-onset mental health diseases have strong epigenetic links, but no genetic tests are yet available for them. Family history (FH) information in paediatric primary care should be promoted to assist decision-making. This study aims to explore the extent of the real-life use of the FH for mental health issues by paediatric physicians. Met...
Article
Achtergrond en doelstellingVeel aandoeningen en ontwikkelingsstoornissen hebben, ook op kinderleeftijd, een sterke genetische grondslag. In de praktijk van de jeugdgezondheidszorg (JGZ) wordt deze genetische component niet altijd benut. Een goede familieanamnese kan de verbinding tussen de JGZ-praktijk en de genetica faciliteren. In deze literatuur...
Article
Achtergrond en doelstellingBinnen de jeugdgezondheidszorg (JGZ) vormt de familieanamnese een belangrijk instrument voor de opsporing van kinderen met een risico op het ontwikkelen van multifactoriële aandoeningen. Op grond van de informatie uit de familieanamnese kan de jeugdarts gepersonaliseerde en preventieve strategieën toepassen. De American A...

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