Evidence-Based Neuroethics for Neurodevelopmental Disorders Eric Racine, PhD,*,†,‡,§ Emily Bell, PhD,* Nina C. Di Pietro, PhD,¶ Lucie Wade,*,§ and Judy Illes, PhD¶ Many neurodevelopmental disorders affect early brain development in ways that are still poorly understood; yet, these disorders can place an enormous toll on patients, families, and society as a whole and affect all aspects of daily living for patients and their families. We describe a pragmatic, evidence-based framework for engaging in empiric ethics inquiry for a large consortium of researchers in neurodevelopmental disorders and provide relevant case studies of pragmatic neuroethics. The 3 neurodevelopmental disorders that are at the focus of our research, cerebral palsy (CP), autism spectrum disorder (ASD), and fetal alcohol spectrum disorder (FASD), bring unique and intersecting challenges of translating ethically research into clinical care for children and neonates. We identify and discuss challenges related to health care delivery in CP; neonatal neurological decision making; alternative therapies; and identity, integrity, and personhood. Semin Pediatr Neurol 18:21-25 © 2011 Elsevier Inc. All rights reserved. any neurodevelopmental disorders affect early brain patients and families in the context of research and health Mdevelopment in ways that are still poorly understood. care. In fact, for 3 neurodevelopmental disorders that are at The scope of adverse events in early neurodevelopment the focus of our research, cerebral palsy (CP), autism spec- partly accounts for the wide range and severity of deficits trum disorder (ASD), and fetal alcohol spectrum disorder observed between disorders. As is the case with many brain (FASD), the unique and intersecting challenges of ethically disorders, neurodevelopmental conditions have known en- translating research into clinical care for children and neo- vironmental and genetic influences. These disorders can nates is virtually untouched terrain. To address this gap, we place an enormous toll on patients, families, and society as a describe a pragmatic, evidence-based framework for engag- whole and affect all aspects of daily living for patients and ing in empiric ethics inquiry for a large consortium of re- their families. In the absence of effective medical therapies, searchers in neurodevelopmental disorders and provide rel- neurodevelopmental disorders also create enduring personal evant case studies of pragmatic neuroethics. and economic burdens. Although the needs of patients are met with a range of health, social, and educational services, Ethical and Philosophic there is a lack of evidence about ethical challenges faced by Underpinnings of NeuroDevNet NeuroDevNet is a Canada-wide, multidisciplinary research From the *Neuroethics Research Unit, Institut de recherches cliniques de network dedicated to accelerating the understanding of neu- Montréal, Montreal, Quebec, Canada. rologic conditions that affect children, with a specific focus †Department of Medicine and Department of Social and Preventive Medi- on CP, ASD, and FASD. Consistent with the general philos- cine, Université de Montréal, Montreal, Quebec, Canada. ophy of the Networks of Centres of Excellence of Canada of ‡Department of Neurology and Neurosurgery, McGill University, Montreal, Quebec, Canada. which NeuroDevNet is part of the network strives to improve §Division of Experimental Medicine and Biomedical Ethics Unit, McGill the economic and social well-being of Canadians. Basic and University, Montreal, Quebec, Canada. clinical researchers in the Net explore how the normal brain ¶National Core for Neuroethics, Division of Neurology, Faculty of Medicine, develops, pursue better methods for detecting abnormalities, University of British Columbia, Vancouver, BC, Canada. and strive to uncover new strategies to repair the injured Supported by NeuroDevNet (Drs Illes and Racine) and the Institut de re- brain. NeuroDevNet also builds new investigator capacity by cherches cliniques de Montréal (Wade). Address reprint requests to Eric Racine, PhD, Institut de recherches cliniques training the next generation of researchers in pediatric devel- de Montréal, 110 avenue des Pins Ouest, Montréal, QC H2W lR7, Can- opmental neuroscience and seeks to disseminate new knowl- ada. E-mail: [email protected] edge to inform health care delivery as well as policy decisions. 1071-9091/11/$-see front matter © 2011 Elsevier Inc. All rights reserved. 21 doi:10.1016/j.spen.2011.02.002 22 E. Racine et al Given the unique translational goals of the Net, questions at least in part, on some of these features3,5 because it tackles related to human values and respect for persons surface both practical ethical issues surfacing in neurologic and psychiat- upstream and downstream of research. Therefore, the com- ric care and research.8,9 Much of neuroethics also shares with plexity and sensitivity of the context in which the Net oper- pragmatism an approach grounded in radical empiricism and ates calls for a practical and flexible ethics approach respon- situationalism by embracing the social nature of ethics. In- sive to the wide range of issues and stakeholders at play. As deed, the pragmatic approach we have explicitly adopted leaders and members of the neuroethics Core for NeuroDev- seeks to identify practical starting points and alternatives to Net, we have adopted a pragmatic neuroethics framework to resolve difficult ethical challenges through a negotiated sci- achieve this goal. entific and social process. It is a systematic approach that spans the process of issue identification, discovery, ethical analysis, development of tools, and evaluation of impact. It Pragmatic Neuroethics for incorporates the philosophy that knowledge and communi- Neurodevelopmental Disorders cation about neuroscience are both multidimensional and multidirectional.3,10 Neuroethics is a relatively new field that lies at the intersec- We argue that any complete model for understanding neu- tion of bioethics and neuroscience. Neuroethics focuses on rodevelopmental disorders must include an understanding of the ethics of neuroscience research and the ethical issues that the ethical and social challenges that individuals with neuro- emerge in the translation of neuroscience research to the logic disorders face on both a daily and acute basis. Accord- clinical and public domain.1 This field “aligns the exploration ingly, the pragmatic approach we have (1) brings the voice of and discovery of neurobiological knowledge with human people affected by neurodevelopmental disorders to the fore- value systems.”2 The neuroethics core for NeuroDevNet puts ground of discoveries and translation in health research and a particular emphasis on the importance of including all care; (2) shifts the ethical perspective to the “agent in context” stakeholder views in informing these ethical perspectives in- from ethical frameworks that focus on the individual to cap- cluding patients, researchers, families, community groups, ture the complex interactions of genetics, social contexts, and advocacy groups, and physicians. Similarly, we strive to an- disability; and (3) provides a platform for the integration of ticipate ethical challenges, acquire empiric evidence to un- social science and biomedical research. derstand them, and deliver practical solutions in the form of recommendations and guidelines. Some of the key reflections on this approach come from Case Examples philosopher John Dewey, who characterized major aspects of ethics as follows (for a more extensive review, see Racine3): Health Care Delivery in CP (1) situationalism, the importance of context to understand Individuals with CP represent one of the largest cohorts of human behavior and its possible universal implications; (2) children with physical disability; yet, the nature of the ethical (radical) empiricism and experientialism, the importance of challenges they face with regard to access to health care, empiric knowledge and experience to understand the nature of respect for autonomy, communication of health information, ethical behavior and the real-world consequences of human respect for confidentiality, and research participation are acts; (3) social nature of ethics, ethics being shaped by social poorly understood. Adolescents and young adults with CP networks and systems; (4) interdisciplinarity, ethics being the experience particular challenges when making the transition application of knowledge to human situations rather to a partic- from the pediatric to adult health systems, including a lack of ular province of knowledge or expertise; and (5) practical focus, preparation for the transition11-14 and a lack of integrated care ethics as guidance for practical action in daily life. in adult-centered settings.12,14-16 These challenges are com- Openness to different ethical approaches in light of their pounded by the limited recognition of the active role that consequences is perhaps one of the most distinctive features health care providers have in helping patients get access to of a pragmatic approach to ethics. In fact, pragmatism de- health care services and educational and employment oppor- clines a commitment to any a priori set of ethical principles or tunities.17-19 In a recent pilot study, we showed that adoles- virtues. Instead, pragmatism builds on empiric research to cents and young adults with CP experience a range of chal- inform ethics in substantial ways. Within a pragmatic frame- lenges with ethical implications during medical consultations