Research Kristien Hens

Abstract

Research into health and well-being has historically been neglected in critical populations, particularly in women, children, and socioeconomically disadvantaged groups. This global issue, characterized by systemic neglect and underfunding, underscores an urgent need for research centres to spearhead transformative initiatives. A multidisciplinary approach is pivotal in addressing these disparities effectively. Our proposal introduces the establishment of the "U-MaMi" Research Centre of Excellence, designed as an integrated ecosystem to drive impactful research, innovation, education, policy, and community engagement, with a keen focus on health equity and microbiome-centric research. This ecosystem involves principal investigators and their team members from key disciplines to achieve these goals: microbiology and microbiome research (Sarah Lebeer), bioethics (Kristien Hens), general medicine (Veronique Verhoeven), paediatrics (Stijn Verhulst), ear-nose-throat specialication (Olivier Vanderveken), sociology (Karel Neels) and marketing (Annouk Lievens). With the chosen name for our centre, "U-MaMi," we do not only recognize the pivotal role of mothers and 'maternal microbes' in shaping the microbiome and health of their children, but also emphasize the importance of a united and inclusive perspective on health and health equity to drive transformative actions.

Researcher(s)

• Promoter: Lebeer Sarah
• Co-promoter: Hens Kristien
• Co-promoter: Lievens Annouk
• Co-promoter: Neels Karel
• Co-promoter: Vanderveken Olivier
• Co-promoter: Verhoeven Veronique
• Co-promoter: Verhulst Stijn

Research team(s)

• Laboratory of Applied Microbiology and Biotechnology (LAMB)

Project type(s)

• Research Project

Abstract

Posthumanist environmental philosophy is a promising approach to rethinking humanity's relationship with the natural world. However, there are multiple challenges standing in the way from it being applicable in a wide range of circumstances. In particular, this movement faces challenges of agency, ethics and implementation. That is, posthumanist environmental philosophy leaves unclear how human agency should be understood, what its relation is to existing approaches to ethics, and how its insights should be implemented. This research aims to tackle these challenges in order to make posthumanism more applicable in real life. The challenge of agency is addressed firstly through conceptual engineering on the concepts 'autopoiesis' and 'sympoiesis', before broadening the analysis to include the wider discussion on agency. The challenge of ethics is addressed through a critical comparative analysis between posthumanist normativity and care and care ethics. The challenge of implementation is addressed through a field-philosophical collaboration with the Embassy of the North Sea. The final product of this research will be a framework for a posthumanist ethics – one that is consistent with posthumanist aims and commitments while simultaneously adding clarity and practicability to the existing literature.

Researcher(s)

• Promoter: Hens Kristien
• Fellow: van Son Teun

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

Recent events such as the Covid19-pandemic and controversy around Muslim cemeteries have revealed the important and increasingly complicated task of the funeral sector in Belgium. The funeral sector is a relatively small yet important societal sector where every member of society at one point or another passes through. Major societal changes (like climatechange induced catastrophes, growing cultural diversity, secularisation) affect the decisions and services that funeral undertakers have to take and provide, and reveal the shortcomings in education, in deontological codes, and in legal frameworks. The diversification of funeral preferences combined with heightened awareness of the vulnerability of the sector during public health catastrophes leads to a sense of urgency in the funeral sector (in Belgium). This proposal identifies four sources of challenges: sociological changes, environmental concerns, public health crises and juridical gaps. With a comprehensive, interactive and multi-disciplinary approach the proposal aims to contribute to the professionalisation of the funeral sector through a more accurate juridical framework, policy protocols for future pandemics, the design of an ethical committee for the sector, the juridical and sociological accommodation of funeral needs of minorities (with a special focus on the Muslim community which is an important minority in Belgium), a collective ethical reflection on the environmental impact of our funeral choices, an action plan to making the funeral industry conform with climate neutral European regulation and a transferral of gained insights through education modules (tailored at the funeral industry) and a podcast (on the ethics of funeral practices in a superdiverse sustainable society) and a broadcast (on changing funeral preferences and societal problems) on national newssite +radio (for the wide audience).

Researcher(s)

• Promoter: Schaubroeck Katrien
• Co-promoter: Bellinkx Vincent
• Co-promoter: Hens Kristien
• Co-promoter: Kostet Imane
• Co-promoter: Van Assche Kristof
• Co-promoter: Van de Velde Sarah
• Co-promoter: Vansweevelt Thierry
• Co-promoter: Verschraegen Gert

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

This project is one of the first in-depth cultural sociological explorations into autism's ethnic and racial inequalities. It critically examines how ethnicity and race become (in)visible in how autism is constructed and represented as both a medical category and an identity. While we know from gender studies that autism has been strongly shaped and represented as masculine, resulting in gender disparities in autism rates, constructions and representations of autism in relation to ethnicity and race remain relatively underexplored. Using qualitative methods and employing the concept of symbolic boundaries, this project seeks to understand the ways in which autism becomes 'ethnicised' or 'racialised' through 1) the communications of major autism organisations, autobiographical books, blogs, and vlogs about autism; 2) the perspectives, experiences, and practices of diagnosticians; and 3) the perceptions and lived experiences of ethnic and racial minority autistic adults. These issues are specifically addressed in the context of Western Europe, where ethnic and racial disparities in the prevalence of autism exist but have received little empirical attention in their own socio-cultural contexts. In doing so, this study ties in with broader calls to rethink academic and lay knowledge about disabilities such as autism as deeply embedded in socio-culturally situated processes of meaning-making, and to examine how this knowledge is influenced by the rhetorical aspects of disability.

Researcher(s)

• Promoter: Verschraegen Gert
• Co-promoter: Hens Kristien
• Fellow: Kostet Imane

Research team(s)

• Centre for Research on Environmental and Social Change

Project type(s)

• Research Project

Abstract

MicroTuning is dedicated to intertwining microbiota in cooling towers and human lungs and proposes a shift of perspectives: Cooling towers of electric power stations provide an extraordinary ecosystem for interdependent microorganisms to flourish. Among these are the highly monitored and combated bacteria, Legionella p. that pose a serious health risk for humans. The microbial communities can ascend from the cooling tower water basin via evaporating steam, attach to the microbial world on the tower walls, detach, and join the (aero)microbiome in the air. They can then become part of the lung microbiome and cycle back into air, water, and towers. Can this unique biodiverse ecosystem be considered other than a threat to humans? Through fieldwork, laboratory and biophilosophical study, we develop new insights into these realities. The artistic inquiry then proposes new imaginaries of microbiomes and their hosts as interdependent and co-constitutive, using visual and sonic media. MicroTuning is a research creation, designed as a process. Hereto, I build upon my previous adventurous ways of working (method), the 'way of play'. It aligns with the qualities of improvisation music. Inspired by P. Oliveros, T. Ingold and L Lippard´s views about 'tuning with awareness´ I will further this path experimentally.

Researcher(s)

• Promoter: Hens Kristien
• Fellow: Vandeput Bartaku

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

Environmental factors are crucial to physical and mental health—they impact even the expression of our DNA. The study of epigenetics provides better understanding of gene-environment interaction. Environmental influence can come from outside and inside the organism but one environmental factor that is typically overlooked is people's knowledge production and beliefs. PredicGenX responds to the scientific worry that predictions about genes are likely to be reflexive i.e., they impact the eventual outcome. Scholars have raised concerns that beliefs about genetic information affects genetic risk to match that information—a so-called self-fulfilling prophecy not unlike the placebo and nocebo effects. Studies showed that receiving one's genetic risk profile can change physiology independent of actual genetic risk. Moreover, the current trend to focus on risk, biomarkers, and early diagnostics produces 'knowledge' which is inevitably based on undetermined information, given that gene expression is not fixed. Asserting genetic information as determined when the assertion itself has potential impact on genetic expression is especially alarming considering the popularity of direct-to-consumer genetic testing and precision medicine. Understanding the direct impact of genetic predictions on gene-expression, its vulnerability to feedback loops, and their moral implications is crucial, urgent, yet currently lacking. With this project, I aim to fill that knowledge gap. Through qualitative fieldwork and philosophical analysis, I will theorise the different ways in which reflexive (epi)genetic prediction manifests and—while detailing a descriptive account of the different models—offer an analysis of the epistemic and ethical implications of their reflexivity on research and practice, and the meaning for therapeutic intervention.

Researcher(s)

• Promoter: Hens Kristien
• Fellow: Mertens Mayli

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

Uni4Equity general goal is to strengthen universities readiness to identify, map and respond to on-line and off-line sexual harassment (SH) at workplace and other relevant settings (classrooms, digital space), with an explicit but not exclusive attention to minority social groups. More specifically, it is aimed: 1) To reinforce universities teams, networks, and units in charge of gender equality issues through structural reforms, improved work processes and the engagement of key stakeholders for the prevention of SH; 2) To promote mutual learning and exchange of good practicesto identify and tackle SH at the university among different target groups; 3) To increase the social awareness about the importance of rejecting all forms of SH and the need to contribute to its prevention and combat among university members; 4) To improve the skills and the capacity of professionals and the availability of tools and resources to address and follow up it; 5) To reduce the exposition to SH risk factors at different levels of relations (interpersonal, institutional and social) for different target groups at the universities, including minority social groups; 6) To minimize the impacts SH may cause on victims; 7) To contribute to the acknowledge of the universities as an asset to prevent and response this problem; and, 8) To address prevention and combat of SH at university as a priority issue for gender equality promotion. Enhancing these aims requires an ecological approach that integrate strategies at different levels of prevention (primary, secondary and tertiary ones). The main target group will be students, teachers and administrative staff at the university, including social minority groups. It is proposed a multi-agency cooperation between universities and other relevant social actors to promote these changes through a mixed-method participative methodology

Researcher(s)

• Promoter: Schaubroeck Katrien
• Co-promoter: Hens Kristien
• Co-promoter: Van de Velde Sarah
• Co-promoter: Van Doorslaer Sabine

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

The overall aim of the REALM project is to create a collaborative framework for regulatory authorities, application developers, healthcare professionals and policy officers to co-create and evaluate software for medical and healthcare use. We propose to create an inclusive platform leading to a transparent ecosystem for evaluation and certification of software in healthcare where both the developers and the regulatory (and Health Technology Assessment) bodies have access to a standardized set of technology stack and data. This will be achieved by first mapping and analyzing regulations, legislative efforts and guidelines from EU, national bodies and around the world on software in healthcare practice. These will guide the roadmap towards building an inclusive, fair and multistakeholder ecosystem. The scaffold for an integrated architecture will be developed in collaboration with DARWIN, based on standardized data models and optimized data driven methodologies for the effective use of real-world data (RWD) in healthcare regulatory practice. The architecture will consist of four components: two technological infrastructures, a living lab and a post-marketing surveillance module. i) a federated cloud-based data resources catalog will be established, to bring together currently available RWD data and synthetic data to facilitate the data needs of the platform. ii) Regulatory Toolbox will be established to bring together standardized tools to train, test, evaluate and monitor medical/healthcare software. iii) Living lab environment for piloting medical/healthcare software technology assessment taking into account human-software interactions as part of the system. iv) Post-marketing surveillance with RWD for ensuring quality standards of the certified software in practice. Finally, building on the proposed architecture, five real Medical Device Software (MDSW) projects are going to be implemented across 3 countries (Netherlands, Belgium and Greece).

Researcher(s)

• Promoter: Hens Kristien

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

High chronic illness rates and the increased prevalence of comorbidities put the current curative and evidence-based medical model under considerable pressure. In this context, precision medicine (PM) emerges as a novel data-driven approach to medical research and clinical practice. This new paradigm in medicine introduces distinct bio-ethical and (social) epistemological issues. In this proposal I present standpoint epistemology (SPE) as an innovative, potentially fruitful way to explore PM. SPE states that social position plays a role in establishing knowledge, which is therefore partial. SPE is also committed to the epistemic advantage thesis, which states that historically underrepresented perspectives have a distinct advantage in identifying knowledge gaps. In this project, I explore potentially fruitful applications of SPE in PM on three distinct levels, using both empirical (interviews) and theoretical methodologies. First, SPE offers a moral and epistemological incentive to include the perspectives of historically underrepresented groups in PM research (methodological level). Secondly, it motivates us to expand bioethical inquiry and attend to empirically informed bioethics in PM (bioethical level). And finally, based on the situated knowledge thesis, SPE can help us identify moral-epistemological issues in PM (moral-epistemological level). This project intends to further the bioethical debate on PM and PM practice by investigating the usefulness of an SPE approach.

Researcher(s)

• Promoter: Hens Kristien
• Fellow: Kenis Daan

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

Individuals with mental health (MH) conditions and their families, especially those with highly prevalent neurodevelopmental diversity (NDDs), are exposed to high levels of discrimination and stigma, which significantly affects their physical and mental well-being. Our world-leading collaborative group at the forefront of research in NDDs will launch a new project - ?Risk, Resilience and Developmental Diversity in Mental Health? (R2D2-MH). We propose a double paradigm shift to improve the wellbeing of people with MH conditions and their families. We will move (i) from risk-focused studies towards understanding and promoting resilience, and (ii) from a diagnosis based approach to a developmental diversity approach that will define wellbeing and functioning across the human lifespan. R2D2- MH aims to identify genetic and environmental protective/resilience factors and how they influence developmental diversity and MH. We will investigate at multiple levels two highly prevalent early risks for MH conditions: prematurity and genetic liability for NDDs. Our project has four main ambitions 1. Provide the largest European multi-scale dataset on early human brain development and MH outcomes; 2 Identify biological mechanisms of resilience to the adverse effects of NDD; 3. Co-develop, with the stakeholders, new digital tools to increase participatory research/medicine and reduce stigma; 4. Establish predictive models to guide personalised interventions. R2D2-MH integratesinterdisciplinary and complementary expertise across Europe, Israel, and Australia that covers ethics, epidemiology, sociology, genetics, cell biology, neuroscience, computational modelling, Information Technology, psychology, and psychiatry. Our research is highly engaged: it embeds participant and patient involvement in research to ensure that our expected outcomes are truly translational, and will help to reduce stigma and burden for individuals with MH conditions.

Researcher(s)

• Promoter: Hens Kristien

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

Raising autistic children is not self-evident. Parents of young children with autism are often confronted with daily challenges, resulting in uncertainties regarding their roles and responsibilities in parenthood. By a timely diagnosis and intervention, clinicians may provide some initial guidance: sharing knowledge on autism and adapted parenting practices is key to early intervention. However, lived experience of other parents and insights from neurodiversity theory may give rise to the question of whether such early intervention from professional experts is doing full justice to the many layers of autism as a phenomenon and the diversity of roles and responsibilities of parents in particular. Therefore, this project's central question is how clinicians can support parents of a young child with autism in their multiple roles and responsibilities in an empowering way. First, we aim to gain a layered insight into the roles and responsibilities of parents of young autistic children from different perspectives. Using qualitative methods, we will analyze perspectives from (a) the academic literature on early interventions, (b) parents with lived experience, and (c) neurodiversity scholars. Building on this layered insight, we aim to co-create and test a group-based intervention for parents of young autistic children in collaboration with an advisory group consisting of parents, clinicians and neurodiversity scholars.

Researcher(s)

• Promoter: Hens Kristien

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

The way we practice medicine now and in the near future will be different. One the one hand we have the ever decreasing costs of revolutionary technologies such as genomics, proteomics, wearables and miniaturization of laboratory tests such as ELISAs and PCR-based biomarker detection (among many other inventions). On the other hand, there is the trend to apply these technologies on a larger scale and transform medicine in a data-rich science, where high-quality data from large cohorts will be used to gain new insights into diseases. This will lead to better and earlier diagnostics. The ultimate goal is preventing diseases, by taking preventive measures before the onset of a disease. This revolution in data gathering and also poses new ethical questions: First of all, pose these new technologies privacy risk for participants in the study? Second, how do we manage this sometimes sensitive data and who does actually owns it? How do we ask for consent in large cohorts with many different data types? What about incidental findings? The pilot study "I am Frontier" puts us in a good spot to provide answers and recommendations for these questions since we will have will many different data types (from genomics and proteomics to clinical and lifestyle data) of all participants and we can also chart their expectations and experiences. Especially for proteomics, we want to chart the privacy risks of this data type since, for now, it is considered non-personal data.

Researcher(s)

• Promoter: Hens Kristien
• Co-promoter: Boonen Kurt

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

With this project, we want to investigate the hypothesis that reflecting on the challenges and questions raised by epigenetics can shed some light on the current discussions on environmental ethics issues. Specifically, we will focus on whether technological solutions are an adequate response to environmental crises and whether environmental responsibility should be understood as primary an individual or a collective endeavor, or that we have to abandon dualistic thinking about the concept of responsibility itself. As we believe that ethical reflection on responsibility concepts also entails investigation of intuitions regarding responsibility, the project also entails an empirical part. We investigate values and intuitions regarding responsibility of researchers and research participants in two projects about pollution and epigenetics. Hence, our research question is: How does a dynamic concept of human biology influence concepts of moral responsibility towards environmental pollution?

Researcher(s)

• Promoter: Hens Kristien
• Fellow: Vulliermet François-Lucien

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

Synthetic biology is a new discipline that allows designing and creating novel, completely man-made biological systems such as metabolic pathways. The innovative technology is a game-changer for the sustainable production of pharmaceuticals, biofuels, enzymes, aroma compounds and bioplastics. The synthetic systems are often implemented in E. coli or yeast cells because the biotechnological toolbox for these organisms is readily available. However, these microbes are often not optimally suited for industrial or medical applications. This project therefore aims to develop a novel toolbox that allows the ethical exploitation of superior non-standard microbes. The project will not only yield an important breakthrough for the efficiency and possibilities of synthetic biology, but also constitutes a research consortium of a team of young and ambitious scientists that will serve as a strategic hub for the further development of synthetic biology in Flanders, thereby helping to maintain its leading position in biotech.

Researcher(s)

• Promoter: Lebeer Sarah
• Co-promoter: Hens Kristien

Research team(s)

• Laboratory of Applied Microbiology and Biotechnology (LAMB)

Project type(s)

• Research Project

Abstract

Current reproductive technologies allow for the sharing of reproductive material and functions between family members. For example, a mother can be a donor for her daughter in case of uterus transplants, or someone can be a sperm donor for their infertile brother. Such sharing of material raises ethical and conceptual questions about the type of kinship that thus comes into being and the rights and duties of family members when it comes to reproduction.

Researcher(s)

• Promoter: Hens Kristien

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

The transition to preventive medicine based on precision data raises several interesting philosophical and ethical questions. First, there is the question of the implications for responsibility. Preventive medicine has the potential to transform the concept of 'being a patient': as more and more risk factors are discovered in genomic and other data, more and more people gain actionable information about their health status. They all become potential patients. This transformation has relevance for how we conceive of responsibility for health. To which extent does more information also imply more individual responsibility for health? To which extent is there a collective responsibility to enable people to take care of their health? Can nudging techniques be employed? Is preventive medicine an individual or collective endeavour? Second, this ties in into the question of the value-ladenness of concepts of health and disease. Existing discussions of personalized medicine often take for granted that the question of what is 'good' or 'healthy' is fixed. Hence, 'personalized' refers to how health can be achieved but does not investigate how the meaning of 'health' is also linked to personal choices and contexts. If the aim of preventive medicine is to allow as many people to live good lives, it may need to include personal choices and contexts into the equation. Third, such a truly personalized approach may help the empowerment of patients. On the one hand, understanding and taking action on one's own health risks may empower people to take up responsibility for their own wellbeing. On the other hand, some people will not take up specific recommendations or consider the idea of preventive medicine an infringement of their autonomy. In this exploratory project, we will make an inventory of existing thoughts and opinions on responsibility, concepts of health and disease and empowerment in the context of precision medicine. This will be done through a study of the existing literature, but also in close engagement with the WeAre-partnership – composed of VITO, Vlaams Patiëntenplatform, Domus Medica, Zorgnet-Icuro and the Koning Boudewijnstichting – which is actively involved in building up an innovation ecosystem for personalized and preventive healthcare solutions, and by means of interviews with relevant stakeholders.

Researcher(s)

• Promoter: Hens Kristien

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

B2-InF promotes Responsible Research and Innovation (RRI) and public participation in the field of Assisted Reproduction Technologies (ART), in order to align its scientific exercise and dissemination with the knowledge, concerns and expectations of populations (18-30 year-old) in Belgium, Switzerland, Italy, Spain, Macedonia, Albania, Slovenia and Kosovo. How? 1) By collecting, analyzing and transferring social scientific knowledge, expectations, and concerns about ART to clinics and policymakers and 2) by improving the scientific information offered by ART clinics to society from sociocultural, legal and gender perspectives through recommendation guidelines. B2-InF's target population is young people aged 18 to 30 who are childless and have not yet considered having offspring or experienced the need for ART, and therefore are not yet conscious of their fertility needs. Members of this population are referred to as "not patients" or "young population." B2-InF defines ART to include every procedure that involves manipulation of gametes to achieve pregnancy in the treatment of infertility. B2-InF also follows World Health Organization's definition of infertility: "lack of conception following one year of unprotected sexual intercourse."

Researcher(s)

• Promoter: Hens Kristien

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

Video games are sometimes thought to cause aggression, isolation or mental illness, despite the lack of conclusive evidence. The depiction of people with mental illness in video games is also often problematic, as the stereotype of the psychopathic character and of the mental institution as a setting for horror. However, more and more, artists use video games as a way to express their experiences with psychiatric diagnoses. Also, more and more games feature realistic and nuanced characters with a psychiatric diagnosis. With this project we want to investigate, using methodologies from disability studies and empirical philosophy, what we can learn from video games regarding the experience of a psychiatric diagnosis, especially autism, psychosis and depression.

Researcher(s)

• Promoter: Hens Kristien
• Co-promoter: Van Goidsenhoven Leni
• Fellow: Meinen Lisanne

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

In folk psychology and in bioethical discussions, the central dogma of genetics is often taken for granted: humans are seen as defined in a genetic blueprint. The conceptualization of psychiatric conditions as innate or acquired, biological or psychosocial, genetic or environmental, influences the ascription of both capacity responsibility (the capacity to adapt or adjust one's own behavior) and normative responsibility of individuals or the society towards those diagnosed. But findings in the field of epigenetics indicate that the social and physical environment influence how genes are expressed. Indeed, epigenetics may shed a new light on distinctions such as innate/acquired, genetic/ environmental, biological/psychosocial: a far more complex view on neurodevelopmental disorders may emerge, with ethical implications. However, the implications of epigenetics for discussions on the scope and extent of normative responsibility have not been adequately addressed. NEUROEPIGENETHICS aims to investigate the ethical implications of epigenetics for neurodevelopmental disorders. We will use theoretical and empirical methods to investigate how certain concepts (innate/biological/ genetic) affect the ways in which professionals and stakeholders (persons with a neurodevelopmental disorder and their families) conceive of responsibility. We will evaluate how the emerging field of epigenetics alters the ascription of capacity responsibility and normative responsibility. We will research how individuals with Autism Spectrum Disorder (ASD), Tourette Syndrome (TS) and Attention Deficit Hyperactivity Disorder (ADHD)and their families experience the interaction between their condition and their biological and social environment. Finally, we will define moral responsibility in light of the emerging field of epigenetics in the area of neurodevelopmental dis

Researcher(s)

• Promoter: Hens Kristien
• Fellow: Hens Kristien

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

In folk psychology and in bioethical discussions, the central dogma of genetics is often taken for granted: humans are seen as defined in a genetic blueprint. The conceptualization of psychiatric conditions as innate or acquired, biological or psychosocial, genetic or environmental, influences the ascription of both capacity responsibility (the capacity to adapt or adjust one's own behavior) and normative responsibility of individuals or the society towards those diagnosed. But findings in the field of epigenetics indicate that the social and physical environment influence how genes are expressed. Indeed, epigenetics may shed a new light on distinctions such as innate/acquired, genetic/ environmental, biological/psychosocial: a far more complex view on neurodevelopmental disorders may emerge, with ethical implications. However, the implications of epigenetics for discussions on the scope and extent of normative responsibility have not been adequately addressed. NEUROEPIGENETHICS aims to investigate the ethical implications of epigenetics for neurodevelopmental disorders. We will use theoretical and empirical methods to investigate how certain concepts (innate/biological/ genetic) affect the ways in which professionals and stakeholders (persons with a neurodevelopmental disorder and their families) conceive of responsibility. We will evaluate how the emerging field of epigenetics alters the ascription of capacity responsibility and normative responsibility. We will research how individuals with Autism Spectrum Disorder (ASD), Tourette Syndrome (TS) and Attention Deficit Hyperactivity Disorder (ADHD)and their families experience the interaction between their condition and their biological and social environment. Finally, we will define moral responsibility in light of the emerging field of epigenetics in the area of neurodevelopmental disorders and child psychiatric practice.

Researcher(s)

• Promoter: Hens Kristien

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

The lived experience of what it means to have a diagnosis of autism has not gained sufficient attention. In this project, I will interview 12 adolescents (14-18 years old) who have received a recent diagnosis of autism. I will query how they experience having a diagnosis, and how they experience 'autism' and 'being different'.

Researcher(s)

• Promoter: Hens Kristien

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

Although it is reasonable to accept that those parents who are not genetically linked to their children have equal parental status and rights and obligations as those who share their genes with their children, the meaning of the genetic contribution for the resulting children is less straightforward. A practice in which the importance of the genetic link for offspring has been much discussed in the media recently is that of artificial reproduction, through artificial insemination or IVF, with donor gametes or embryos. However, a systematic study of values and opinions of donor conceived children is missing. The aim of this study is to investigate how do persons conceived through artificial reproduction techniques (ART) using donor gametes think about parenthood and the importance of genes, by means of focus groups. An evaluation of the role and significance of genetics and biology in relation to parenthood has important consequences for the way we conceive parenthood in philosophy and law, as it may, by reevaluating what makes one a parent, put into question the often deployed distinction between 'biological' and 'social' parenthood. With this study we want to add to the ongoing debate on parenthood, genetics and biology by interviewing those who are acutely confronted with such questions in their lives, the children that have been conceived through artificial reproduction with donor gametes. We aim to map opinions and lived experiences of donor conceived adults, as a first effort to elucidate on a more conceptual level the meaning of genetics and biology in the context of parenthood and kinship. On the basis of this mapping, a philosophical analysis of ethical and legal implications of anonymous vs. non-anonymous sperm donation could be fruitfully developed.

Researcher(s)

• Promoter: Hens Kristien

Research team(s)

• Center for Ethics

Project type(s)

• Research Project

Abstract

This project deals with the question of responsibility of pregnant women towards their child. As such, there is a need to investigate also the perspective of women themselves, a perspective that is sometimes overlooked in philosophical discussions on this theme. I will explicitly also investigate the ideas and theories of feminist philosophers and their viewpoints on responsibility, pregnancy and difference, and investigate the viewpoints of women in the qualitative part of the research to avoid gender bias.

Researcher(s)

• Promoter: Lemmens Willem
• Fellow: Hens Kristien

Research team(s)

• Center for Ethics

Project type(s)

• Research Project