NEURODIVERSITY BETWEEN LAW AND SCIENCE

Project Information

NEDBELS

Grant agreement ID: 656988

DOI

10.3030/656988

Project closed

EC signature date 24 March 2015

Start date 1 September 2015

End date 31 August 2018

Funded under

• EXCELLENT SCIENCE - Marie Skłodowska-Curie Actions

Total cost

€ 159 034,56

EU contribution

€ 159 034,56

Coordinated by

ALMA MATER STUDIORUM - UNIVERSITA DI BOLOGNA
Italy

Periodic Reporting for period 2 - NEDBELS (NEURODIVERSITY BETWEEN LAW AND SCIENCE)

Reporting period: 2017-09-01 to 2018-08-31

Summary of the context and overall objectives of the project

NEDBELS was designed to inquire 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 explored 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 were: (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.

During the period covered by the action, NEDBELS was able to merge and harmonize new scientific knowledge, as well as skills and clinical experience acquired during the permanent training with the result of legal, judicial and social claims mapping. This showed how judicial enforcement of the law, as well as legal interpretation of fundamental constitutional principles 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.

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 project included two parts: 1) the outgoing phase; and the 2) reintegration phase.

Through the work performed during the first part, the action achieved the following results: 1] Permanent Training in Neurosciences and Cognitive Neurosciences. This objective was reached by establishing a collaboration with the UCSF-Dyslexia Centre and (2) the UCSF-STAR Centre for Autism and Neurodevelopmental Disorders. 2] Specific training through research, which included the following areas: (a) understanding treatment and interventions; (b) deepening the understanding of diagnostic such as neuroimaging and neurocognitive tests both in the realm of NDD and LD; (c) deepening the understanding of neuro-anatomy and neurophysiology; (d) deepening the understanding of prevalence data. This training included the opportunity to understanding of the actual obstacles that patients and families 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. 3] 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. 4] 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

Through the work performed during the second part, the action achieved the following objectives and results: 1] Reintegration phase (dissemination, public engagement, and Marie-Curie Ambassador). This objective was fulfilled through a schedule of: a) presentations, b) lessons in master degree programs and university courses at the H.I. and in other Italian and European academic and political institutions, c) speeches at national and international conferences, d) media appearances such as on radio programs, e) participation in public events, f) networking with national and international political, judicial and research institutions. 2] Secondment. Six- month Secondment were fulfilled at at the Istituto delle Scienze Neurologiche di Bologna in order to acquire further skills in neurosciences and to compare European and U.S. diagnostic methodologies. 3]Career advancement at the H. I.. This objective was fulfilled in order to expand further research and teaching opportunities in Law and Neurosciences. 4] Publication of of a comprehensive article on NEDBELS research achievements. This essay will be published in November 2018 in the NYU Journal of International Law and Politics. This objective is the result of: a) merging law and science data; b) synchronizing the comparative judicial analysis and the political analysis of social claims. The article proposes a new common heuristic framework involving neuroscience and law as well as a new theoretical paradigm of the constitutional principle of equality based on the most recent advances in neuroscience. 5] Mentorship of young researchers. NEDBELS achieved this objective by developing a program of mentorship for future researchers in the new field of Law and Neuroscience. 6] Further development: NEDBELS collaborated on designing an evidence-based studies for determining the prevalence of inmates with language-based learning disabilities in a prison setting. This new research long-term research development constitutes a major achievement of this action. It demonstrates the validity of the NEDBELS methodology and hypothesis, namely the importance of bringing together legal skills and neurocognitive tools in an interdisciplinary way.

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 expanded the capacity of inter communication between the fields of science and law. The action contributed to build a common understanding of mutual concepts by facilitating the convergence of Law & Science heuristic and vocabulary. When NEDBELS was designed, the concept of neurodiversity was almost unknown within the legal arena. Furthermore, within scientific community, the legal implications of the disorders pertaining to the concept of neurodiversity were not entirely understood.

During the action, the research goals reached the expected targets and gone beyond them. In particular, NEDBELS achieved the following core impacts: 1) expanding the capacity of intercommunication between science and law in the field of neurosciences; 2) shifting public awareness as well as policy-makers and stakeholders to understanding the different aspects of neurodiversity; 3) arguing for a shift from a strictly “medical model” of
disability to a “rights and citizenship” one. The action achieved the impacts following a multi-faceted strategy based on: 1) 24-month outgoing training through research, as well as six-month secondment for extra training in science and medicine; 2) harmonizing neuro-scientific data with legal, judicial and political analysis; 3) transferring knowledge to society, stakeholders and scholars by holding conferences, workshops, and public speeches; 3) publishing NEDBELS research results.

U.S. Judicial Data Comparison

Judicial Trend and Prevalence Trend

U.S. Judicial Data Comparison 2