i Neuroethics ii iii Neuroethics Anticipating the Future Editor Judy Illes Associate Editor Sharmin Hossain 1 iv 1 Great Clarendon Street, Oxford, OX2 6DP, United Kingdom Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford is a registered trade mark of Oxford University Press in the UK and in certain other countries © Oxford University Press 2017 The moral rights of the authors have been asserted First Edition published in 2017 Impression: 1 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, by licence or under terms agreed with the appropriate reprographics rights organization. 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The authors and the publishers do not accept responsibility or legal liability for any errors in the text or for the misuse or misapplication of material in this work. Except where otherwise stated, drug dosages and recommendations are for the non-p regnant adult who is not breast- feeding Links to third party websites are provided by Oxford in good faith and for information only. Oxford disclaims any responsibility for the materials contained in any third party website referenced in this work. v Foreword: Forays into neuroethics It is early 2001, I had just been appointed as the inaugural Scientific Director of the Institute of Neuroscience, Mental Health and Addiction (INMHA) of the Canadian Institutes of Health Research (CIHR). The CIHR was created to usher in a new generation of thinking, action, and innovation about basic and translational research, for junior and more senior scientists and scholars alike. One of the most exciting changes brought about by the creation of CIHR and its 13 insti- tutes was the Institute Advisory Board structure and mandate enabling and encouraging the exploration of novel research avenues and frontiers without the traditional bound- aries. For those of us in brain research, mental health, and addiction, the work of my inaugural Board and its vision were transformational. We nearly immediately departed from conventional ideas about funding in neuroscience to support a New Emerging Team (NET) program in 2002–2 003, with topics such as the impacts of early life events on the developmental course of brain disorders, regenerative medicine, and understanding the placebo effect. This was merely our first call. The second followed directly from my own experiences and leadership of over 20 years in my laboratories at the Douglas Mental Health Institute affiliated with McGill University in Montreal. I was highly aware of ethi- cal issues and challenges to optimal care for the mentally ill, their involvement in various types of clinical trials, and the high incidence of co- morbidity between mental health and addiction. Accordingly, I was keen to promote innovative research on ethical issues related to the broad mandate of INMHA. But neuroethics? I first heard about neuroethics in the early years of the CIHR. I asked some of my col- leagues and few ethicists locally and internationally about it. Most basically said that “It is a fad.” They saw no reason to create this specialty or subfield. In their minds, research on ethics was complicated enough; neuroethics would only complicate the complicated further. In retrospect, by most measures, they were wrong. Neuroethics may have added a layer of complex inquiry to both neuroscience and biomedical ethics, but the sole fact that Neuroethics: Anticipating the Future (2017) today follows Neuroethics: Defining the Issue in Theory, Practice and Policy (2006), speaks for the need, force, and what was to come. INMHA launched two calls to create NET teams on Neuroethics (awarded to research- ers at Dalhousie University in Halifax, Nova Scotia) in addition to a partnered Chair in Neuroethics to recruit an expert from outside Canada. The University of British Columbia won the call, and book Editor Dr. Judy Illes was recruited back to Canada from the United States as the chair holder. This was great coup for all in Canada and for the field as it would ground neuroethics with the highest nationally named position and center yet. Research in neuroethics by many scholars authoring chapters in this book and oth- ers has moved the field forward significantly over the past decade on topics as varied as vi vi ForEword: ForAyS Into nEuroEtHIcS incidental findings in brain imaging, forensic psychiatry, improved design of clinical trials in the fields of mental illnesses, addiction and incurable neurodegenerative diseases, neu- rotechnology, cognitive enhancements, consciousness, and brain death, to name a few. Of course, cutting- edge research in neuroethics is still urgently needed on these topics. Novel areas have also emerged over the last few years to which neuroethics must lead with evidence-b ased, best-w ay- forward guidelines for experts and the civil society. Take for example, artificial intelligence and the interface between robots and the mind: How can the discourse of neuroethics help society to take up related challenges in a sensi- ble, balanced manner? Where will the novel concept of a cognitive footprint take us? Will gene editing (CRISPR-C asp9- type) edit out incurable brain conditions or undesir- able behavioral traits and states— and who will decide? How will the role and impact of various cultures and the environment on values relevant to mental health and addiction evolve? Will wearable technology, social media, digital e-h ealth, and open access to large public and private sets of data bring solutions to global attitudes and demands of societ- ies toward brain diseases and various forms of addiction? And, link to these consider- ations: cybersecurity and open access to large data sets. Neuroethics has matured. It feels unstoppable not only because of the energy brought to it by its current and future leaders, but by the pressing issues awaiting discovery, defi- nition, awareness, and answers. Neuroethics: Anticipating the Future is a signature of this momentum. Rémi Quirion Professor of Psychiatry, McGill University Distinguished Researcher, Douglas Mental Health Institute Quebec Chief Scientist vii Preface Part 1: Looking to the future —Judy Illes and Sharmin Hossain This publication of Neuroethics: Anticipating the Future marks both an anniversary of one of the first edited neuroethics volumes for the field (Illes 2006), as well as of the found- ing of the International Neuroethics Society, the major professional organization for the field. Like the publication of the first book volume that took the groundwork laid out at the Mapping the Field neuroethics meeting in San Francisco, California— now 15 years ago, and another anniversary— and gave it content anchor points in theory, practice, and policy, this one also signals milestones. The authors contributing to the original volume wrote to answer the question: Where should the field go? In this new volume, contributing authors answer the question: Where must the field go next? With significant progress over more than a decade, this is a critical undertaking with both legitimacy and gravitas. In preparing this volume, the three sections on neurotechnology, healthcare, and policy emerged naturally from the contributions we received. The prescient Joseph J. Fins pre- dicted the neurotechnology focus in his epilogue to the Oxford Handbook of Neuroethics (Illes & Sahakian 2011). Healthcare and public good are unwavering themes for the field, involving ethical challenges around brain future of youth, aging and dementia, brain injury and consciousness, stem cells and neurologic conditions, and global health and cross- cultural justice, among others. With one foot within and one foot outside the walls of the hospital and academy, neuroethics in the wild brings considerations of social and regulatory challenges to a leading role in new discourse about the environment, brain, and mental health, in part in a global rapprochement between neurology and psychiatry, internationalization and intersections of brain and security, and criminal justice. Among the mix of authors are neuroethicists in the pipeline for leadership who are playing a pivotal role in charting the course of the field for decades to come. Like those who are more senior, they hail from diverse disciplines, spanning the humanities, public health and public policy, and science and medicine. Their diversity is reflected not only in their disciplines, but also in their cultural backgrounds— different lenses that bring focus and richness to any area of ethical inquiry. Ten years ago, the International Neuroethics Society provided a platform for a small neuroethics community to engage; today it offers hundreds of faculty, trainees, and col- laborators from around the globe expanded opportunities for networking, showcasing research, and career development, as well as a place to call a professional home. Over the past year, Sharmin Hossain also participated in a further initiative focused on the next gen- eration of ethics and policy leaders: the Trainee Policy and Advocacy Committee (T- PAC) formed under the wing of Kids Brain Health Network (formerly NeuroDevNet, Inc.), viii viii PrEFAcE a trans- Canada Network of Centres of Excellence. T-P AC aims to engage research trainees to advocate for evidence-informed policy making to benefit children living with neuro- developmental disorders, and serves as a practical example of initiatives that neuroethics scholars in training can and, we would argue, should undertake to collaborate toward a unified mission to bring about positive changes to people and society. Throughout the volume, contributing authors bring both deep experience and fresh insights to critical issues in neuroethics, and they bring advanced scholarship, accounta- bility, and transparency to the profoundly interlocking themes of human rights and pro- tections, freedoms, and autonomy. Echoing Hillary Clinton’s nod to the African proverb “It takes a village to raise a child” (Clinton 2006), we say that it takes a community to make a field. Much good work has been done in the 10 years past; and, as the chapters in this volume describe, there is much to do in those to come. ix Preface Part 2: A brief look back —Judy Illes Learning from lessons of the past In the firm belief that to move forward it is essential to learn lessons from the past, the second part of this Preface is a brief look at the history of modern neuroethics. As I reflect on this task, one of the most frequently asked questions comes to mind: Why do we, citizens and beneficiaries of advances in the neuroscience, need neuroethics? And, formu- lated slightly differently: How is neuroethics different than bioethics? My regular answer is: neuroexceptionalism. Unlike the knee or the elbow, the liver or pancreas (but, with new knowledge about the microbiome, perhaps like the gut (Mayer et al. 2014)), the brain connects each of us to who we are. In health and in disease, it links us to our identity, relations, autonomy, personality, capacity to make decisions, and much more. Each is intricately intertwined with the other like the threads of a rope embedded in the context in which we thrive, derive, and survive. It has allowed scholars in the field to frame and reframe ethical concerns explicitly associated with the brain sciences, and to similarly consider governance and advisory frameworks carefully attuned to relevant issues, help- ing to define both good and ethically defensible neuroscience. Reflections I reflect on probably the most quoted phrase for the field, and I give it another nod here: Adina Roskies’ “Ethics of neuroscience; neuroscience of ethics” (Roskies 2002). I have never quite agreed with this dichotomy as the latter cannot exist except within the context of the former, but no matter: even if the phrase is not perfectly dichotomous, its simplicity gave us a welcome and forceful catch phrase to propel neuroethics forward. I continue with other reflections. The topic that never dies: enhancement, whether for the competitive boost or improved mental health (Illes 2016), and more recently for moral fortitude (Persson & Savulescu 2008). If the use of drugs for the moral application could give even a modicum of relief from its terror- riddled world, I would be all for it. Topics that should never die: addiction and mental health, aging and dementia, consciousness, justice and human rights, consent, dignity, pain, regenerative medicine, agency. A topic that took on a life of its own: the management of unexpected (incidental, study off- target) findings in brain imaging research. As much as the question about how to handle incidental findings of possible health significance was not new to genetics, and was introduced originally by the US National Bioethics Commission in 1999 (National
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