Community Research and Development Information Service - CORDIS

H2020

NEDBELS Report Summary

Project ID: 656988
Funded under: H2020-EU.1.3.2.

Periodic Reporting for period 1 - NEDBELS (NEURODIVERSITY BETWEEN LAW AND SCIENCE)

Reporting period: 2015-09-01 to 2017-08-31

Summary of the context and overall objectives of the project

NEDBELS inquires into the legal impacts and socio-political implications of the concept of neurodiversity. This term pertains to individuals diagnosed with neurodevelopmental disorders (such as Asperger’s Syndrome and Autism), as well as people displaying Language-Based Learning Disabilities (such as Dyslexia). The concept of neurodiversity hypothesizes the emergence of a new category of difference in the human population.

NEDBELS explores how neurodiversity challenges the constitutional principle of equality, as well as how it fosters the need to accommodate new principles in criminal and civil law. NEDBELS’ core objectives are: (1) to establish an interdisciplinary framework between neuroscientists, clinicians and legal scholars; (2) to assess the impact of scientific advances in neurodevelopmental disorders on three levels: a) law and policy making; b) adjudication; c) legal theory and conception of the self; and (3) to expand the legal research field of Law and Neurosciences.

Nedbels is based on specific research methodology that is acquiring concrete experience and up-to-date scientific data on neurodevelopmental disorders, creating a profitable intellectual common ground with clinicians and scientists, emphasizing the importance of integrating the clinical perspective into the realm of law, and involving individuals on the spectrum and family. One of its goals is to acquire an advanced understanding of general diagnostic process based on diagnostic battery tests, brain scan technologies, behavioral and cognitive aspects, and understanding of prevalence data.

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

The core work carried out during the reporting period included the following objectives: 1) permanent training in neurosciences as well as training-through-research in neurocognitive sciences; 2) mapping legal and judicial implications of the concept of neurodiversity; 3) mapping the available scientific literature on neurodiversity in an interdisciplinary perspective; 4) mapping the social claims of the neurodiversity movement; 5) harmonizing and systematizing knowledge and collected data in a paradigm shift hypothesis.

Permanent Training in Neurosciences and Cognitive Neurosciences. This objective was reached by establishing a collaboration with two research teams at the University of California San Francisco (UCSF): (1) the UCSF-Dyslexia Centre and (2) the UCSF-STAR Centre for Autism and Neurodevelopmental Disorders.

Specific training through research. The training through research included the following areas: (a) treatment and interventions: after formal training in behavioural interventions, NEDBELS had the opportunity to become an Autism Behavioural Coach in two therapy programmes for young adults with Autism Spectrum Disorder (ASD); (b) deepening the researcher understanding of diagnostic and research techniques such FMRI and neuroimaging, neurocognitive tests and evidence-based diagnostic questionnaires both in the realm of NDD and LD; (c) deepening the understanding of neuro-anatomy and neurophysiology; (d) strengthening the understanding of symptoms and interventions; (e) deepening the understanding of prevalence data. This training included the opportunity to work with patients and families, expanding NEDBELS understanding of the actual obstacles they encounter in everyday life, such as the difficulty in receiving services from the health care system or the public education system as well as in dealing with criminal and labour law systems.

Mapping legal and judicial implications of neurodiversity in a comparative perspective. NEDBELS mapped neurodiversity-related case law decided by constitutional courts in North America and Europe as well as case law decided by the European Court on Human Rights and the European Council on Social Rights. This data set of judgments was subsequently analyzed in a comparative perspective in order to verify differences and similarities between Europe and North America. Specific legislation affecting NDD and LD in specific areas such as health care law, public education and criminal law were also analyzed comparatively during the period covered by this report .

Mapping literature and debates. The mapping process was extended to the available literature on neurodiversity. This process determined a trans-disciplinary definition of neurodiversity. Moreover, legal and judicial mapping was reinforced by analyzing the political debates and social claims of the principal stakeholders in the field of neurodiversity. It included an analysis of policy-strategy and statements made by associations, self-advocacy movements, individual activists and socio-political platforms in Europe and in North America

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

NEDBELS’s interdisciplinary collaboration is expanding the capacity of inter communication between the fields of science and law, building a common understanding of mutual concepts and facilitating the convergence of different Law& Science heuristic and vocabulary. When NEDBELS was designed, the concept of neurodiversity was almost unknown within the legal arena. Moreover, the importance of transferring the most advanced scientific and medical acquisitions on disorders associated with the concept of neurodiversity - such as neurodevelopmental disorders and language-based learning disabilities - was not a topic of discussion among law scholars in Europe and the United States. Furthermore, within the medical and scientific community, the legal implications of the disorders pertaining to the concept of neurodiversity were not entirely understood.

The NEDBELS new skills, knowledge and data were used to critically analyze neurodiversity-related case law decided by the highest courts both in North America and Europe as well as the social claims of neurodiversity stakeholders. As NEDBELS has extensively argued in the paradigm shift article “Brain Equality: Legal Implications of Neurodiversity in a Comparative Perspective”, the new concept of neurodiversity is now transposed into law as a new form of constitutional grounds of discrimination. This new interpretation - that is now being discussed by law scholars both in Europe and in the United States - provides legal and theoretical tools for considering neurodiversity as a new anti-discrimination policy

NEDBELS’s impact is enabling scientists and clinicians to understand legal implications of scientific discoveries or research challenges, and lawyers to explore the legal implications of these scientific advances. Among the scientific and medical community, NEDBELS is progressively demonstrating the legal backdrops of the usage of diagnostic labels, and how they potentially impact the fundamental rights of patients and their family. Among the community of law scholars, NEDBELS is fostering debate around the importance of pushing legislation forward in order to design more efficient provisions for fighting stigmatization, rejection and discrimination of neurodiverse people. These assumptions are reinforced by data derived from the neurodiversity-related case law analysis. This shows how judicial enforcement of the law as well as legal interpretation of fundamental constitutional principles might benefit from a more up-to-date scientific understanding of the disorders associated with the concept of neurodiversity. In fostering this specific debate, NEDBELS is arguing for a shift from a strictly “medical model” of disability to a “rights and citizenship” one.

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