LE CERVEAUIMPORTE

CONFÉRENCE INTERNATIONALE EN NEUROÉTHIQUE

INTERNATIONAL NEUROETHICS CONFERENCE

BRAINMATTERSEthics in the Translation of Neuroscience Research to Psychiatric and Neurological Care

L’éthique dans le transfert des neurosciences aux soins psychiatriques et neurologiques

C O N F E R E N C E P RO G R A MMONTRÉAL, QUÉBEC, CANADA MAY 26-27, 2011

Il nous fait plaisir de vous accueillir à la conférence internationale intitulée « Le cerveau importe 2 : l’éthique dans le transfert des neurosciences aux soins psychiatriques et neu-rologiques ».

Plus que jamais, la recherche en neurosciences, domaine de recherche biomédicale dédié à la compréhension du système nerveux, nous fait voir les bénéfices indéniables de ce secteur pour la société, tout en mettant en lumière des défis éthiques incontournables. En effet, le système nerveux est un organe complexe et encore mal compris. Le paysage éthique des soins de santé et de la recherche biomédicale sur les troubles neurologiques et psychiatriques est façonné par ce paradoxe. Si nous avions de bons traitements concer-nant des maladies neurodégénératives dévastatrices, telle que la maladie d’Alzheimer, une meilleure compréhension du public sur la complexité des problèmes de santé mentale, et une compréhension scientifique générale plus étendue sur des mécanismes cérébraux en cause, peut-être que les défis éthiques et sociaux auxquels nous nous sommes confrontés seraient moindres. Il faut dire que les neurosciences ont maintenant atteint un niveau de maturité intéressant. L’intérêt concernant le travail sur les fondements biologiques des troubles neurologiques et psychiatriques est en plein essor. Certaines des connaissances générées par les neurosciences se traduisent maintenant par l’introduction de nouveaux tests et de nouvelles découvertes dans les soins cliniques des arrêts vasculaires cérébraux, de la maladie d’Alzheimer et de la maladie de Parkinson. Certes, l’application clinique des recherches en neurosciences n’est pas simple. En outre, une fois que des change-ments cliniques sont introduits, le caractère pluraliste des sociétés contemporaines fait en sorte que tous ne seront pas toujours unanimement d’accord sur ce qui constitue une «avancée» ou un «progrè» dans le monde médical. Une chose est certaine, des percées prometteuses font leur apparition en neurosciences, et ces découvertes s’insèrent dans les questionnements plus globaux sur les soins de santé. La façon dont ces nouvelles idées et interventions trouveront leur place dans la société pour mieux servir les individus et le bien public reste à construire.

C’est dans ce contexte que s’est déroulé la première conférence « Le cerveau importe : Les nouvelles orientations en neuroéthique » qui a eu lieu à Halifax en 2009. Dans l’optique de continuer cette démarche et de promouvoir des réflexions interdisciplinaires, nous es-timons que le moment est venu d’accueillir une deuxième conférence internationale sur ce sujet.

de la part des co-directeursIt is our pleasure to welcome you to Brain Matters 2, an international conference dedi-cated to examining ethical issues in the translation of neuroscience research to psychiatric and neurological care.

More than ever the prospects of neuroscience research are bringing to the forefront major benefits and ethical challenges for medicine and society. The maturation of neuroscience has allowed some of the basic knowledge generated by research on the underpinnings of neurological disorders to be translated into new discoveries and the testing of novel insights in clinical care related to stroke, Alzheimer’s disease, and Parkinson’s disease to name a few. The clinical translation of neuroscience is not straightforward and as research progresses and strives to improve clinical practices and public understanding, many sci-entific unknowns make it difficult to produce practical clinical neuroscience applications. Further, once some clinical changes are introduced, the pluralistic nature of contemporary societies means that not everyone will always unanimously agree on what is an “advance” or “progress.” As promising advances surface and percolate through healthcare and to public stakeholders, neuroethics has emerged to address questions related to how new insights and new interventions will find their proper place in society to serve individuals and the public good.

In this context and to follow-up on the momentum gathered with the 2009 conference Brain Matters: New directions in Neuroethics (hosted in Halifax, Canada), the time is ripe to host an international conference focusing on the translation of neuroscience research. Brain Matters 2 will continue to build capacity and promote interdisciplinary reflection.

Sincèrement,

Rémi Quirion, PhD & Eric Racine, PhD

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TABLE OF CONTENT / TABLE DES MATIÈRES

CommitteesComités ....................................................5

AcknowledgementsRemerciements .........................................6

Early Career AwardsBourses de début de carrière .....................7

Program OverviewSurvol du programme ................................8

Plenary talksConférences plénières ..............................10

Detailed Program and AbstractsProgramme détaillé et résumés ................16

Thursday May 26 Jeudi le 26 mai ...................................................... 16

Friday May 27 Vendredi le 27 mai ................................................. 27

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LOCAL ORGANIZING COMMITTEE / COMITÉ ORGANISATEUR LOCALEric Racine (co-chair), PhD, IRCM, Université de Montréal, McGill University, Montréal, Canada

Rémi Quirion (co-chair), PhD, McGill University, Montréal, Canada

Emily Bell, PhD, IRCM, Montréal, Canada

Hillel Braude, MD/PhD, McGill University, Montréal, Canada

Isabelle Chouinard, Graduate student, IRCM, Montréal, Canada

Lesley Fellows, MD/PhD, McGill University, Montréal, Canada

Artur Kania, PhD, IRCM, Montréal, Canada

Jonathan Kimmelman, PhD, McGill University, Montréal, Canada

Nicole Palmour, PhD, IRCM, Montréal, Canada

Lucie Wade, Graduate student, IRCM and McGill University, Montréal, Canada

Constance Deslauriers, MSc, Montréal, Canada

Emma Zimmerman, MSc, Graduate Student, IRCM and McGill University, Montréal, Canada

INTERNATIONAL SCIENTIFIC AND ADVISORY COMMITTEE / COMITÉ SCIENTIFIQUE ET ORGANISATEUR INTERNATIONALJames L. Bernat, MD, Dartmouth Medical College, USA

Adrian Carter, PhD, University of Queensland, Australia

Kevin Chien-Chang Wu, MD/PhD, National Taiwan Univer-sity, Taiwan

Kathinka Evers, PhD, Uppsala University, Sweden

Ralf Jox, MD/PhD, University of Munich, Germany

Shannon MacDonald, Neurological Health Charities, Canada

Sandra Moore, Dalhousie University, Canada

Georg Northoff, MD/PhD, University of Ottawa, Canada

Francisco Ortega, PhD, Universidade do Estado do Rio de Janeiro, Brazil

Peter Reiner, PhD, University of British Columbia, Canada

Abraham Rudnick, MD/PhD, University of Western Ontario, Canada

Barbara Russell, PhD, University of Toronto, Canada

Osamu Sakura, PhD, University of Tokyo, Japan

Illina Singh, PhD, BIOS Centre, London School of Econom-ics & Political Science, UK

Eric Racine, PhD, IRCM, Université de Montréal, McGill University, Montréal, Canada

ABSTRACT COMMITTEE / COMITÉ D’ÉVALUATION DES RESUMÉSEmily Bell, PhD, IRCM, Canada

James Bernat, MD, Dartmouth-Hitchcock Medical Center, USA

Adrian Carter, PhD, University of Queensland,Australia

Paola Diadori, MD, Université de Montréal, Canada

Walter Glannon, PhD, University of Calgary, Canada

Ralf Jox, MD/PhD, University of Munich, Germany

Jayne Lucke, PhD, University of Queensland, Australia

Simon Outram, PhD, Dalhousie University, Canada

Nicole Palmour, PhD, IRCM, Canada

Peter Reiner, PhD, University of British Columbia, Canada

Jason Robert, PhD, Arizona State University, USA

Abraham Rudnick, MD/PhD, University of Western Ontario, Canada

Michael Shevell, MD, McGill University, Canada

Stacey Tovino, PhD, University of Nevada Las Vegas, USA

Lucie Wade, McGill University, Canada

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ACKNOWLEDGEMENTS REMERCIEMENTS

Canada Research Chair in Law and Medicine, McGill University

Institut de recherches cliniques de Montréal

McGill University: Faculty of Medicine

McGill University: Canada Research Chair in Law and Medicine

Canadian Institutes of Health Research: Ethics Office

Canadian Institutes of Health Research: Institute of Neurosciences, Mental Health and Addiction

Montreal Neurological Institute and Hospital

Novel Tech Ethics

Dalhousie University-Schulich School of Law

Réseau de bio-imagerie du Québec

NeuroDevNet

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EARLY CAREER AWARDS BOURSES DE DÉBUT DE CARRIÈRE

Daniel Lamberto Ambrosini

Kara Beasley

Daniel Buchman

Natasha Campbell

Cynthia Forlini

Lisa Forsberg

Julien Jupille

Katja Kuehlmeyer

Georgia-Martha Gkotski

Baptiste Moutaud

Roland Nadler

Stephanie Naufel

Nicole Palmour

Julie Robillard

Mark Robinson

Laura Ross

Maxwell Smith

Emma Zimmerman

Lucie Wade

Louise Whiteley

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TIME LOCATION TITLE PRESENTERS

7:30-8:30 Main Lobby Registration, Breakfast, and Poster Viewing

8:30-8:45 Jacques-Genest Opening Remarks

8:45-9:45 Jacques-Genest Neuroethics: Made in Canada? Fins, J

9:45-10:20 Main Lobby Break and Poster Presentations

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Jacques-Genest1A

PANEL: Deep brain stimulation for neuropsychiatric disorders -Towards ethically and legally responsible use in a vulnerable patient population

Fins, J, Galert,T, Merkel, R. Schläpfer, TE

Room 2551B

The ethics of ADHD diagnosis and stimulant drug treatment: Integrat-ing children’s experiences into public debate and clinical practice

Singh, I

Misrepresentation of neuroscience data gives rise to misleading conclu-sions in the media: The case of ADHD

Gonon, F

Evidence for treatment efficacy on advocacy websites for neurodevel-opmental disorders: the good, the bad, and the irrelevant

Di Pietro, NC

André-Barbeau1C

Generating genius: A critical examination of how an Alzheimer’s drug has become a “cognitive enhancer”

Wade, L

Memory modification technologies and child soldiers Randall, C

Legitimating or stigmatizing? Neuroimages and the brain disease model of mental illness

Buchman, DZ

12:00-1:00 Main Lobby Lunch

1:00-2:00 Jacques-Genest Anticipating possible adverse social impacts of research in addiction Neurobiology

Hall, W

2:00-2:20 Main Lobby Break and Poster Viewing

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PANEL: Chronic disorders of consciousness: Envisioning an ethical guidance

Jox, R, Bernat, JL, Owen, AM, Racine, E

Room 2552B

Has cooling changed things for the asphyxiated term newborn: Ethical perspectives

Shevell, M

The ethics of sham surgery arms in neurosurgical research: A neuro-surgeon’s perspective

McDonald, P

The ethics of neurosurgical innovation: What does the evidence say? Karpowicz, L

André-Barbeau2C

Personal identity: The promise and threat of deep brain stimulation Baylis, F

Changing personality through brain interventions: On the elusive nor-mative impact of being oneself

Clausen, J

Between laboratory and patient: Ethical issues in self-experimentation in neuroscience and the example of DBS

Pacholczyk, A

4:00-5:00 Jacques-Genest Lost in translation: Neuroimaging in psychiatry Farah, M

5:00-5:15 Jacques-Genest Closing Remarks

Thursday May 26th, 2011 / Jeudi le 26 mai, 2011PROGRAM / PROGRAMME

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TIME LOCATION TITLE PRESENTERS

7:30-8:30 Main Lobby Registration, Breakfast, and Poster Viewing

8:30-8:45 Jacques-Genest Opening Remarks and Early Career Awards Ceremony

8:45-9:45 Jacques-Genest A clinical trial, a suicide, and the strange recent history of antipsychotic drugs

Elliot, C

9:45-10:20 Main Lobby Break and Poster Presentations

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Jacques-Genest 3A

PANEL: Neurosciences, neurodiversité et mouvements sociaux Chamak, B, Moutaud, B, Troisoeufs, A, Jupille, J

Room 2553B

Post-market surveillance of DBS Mathieu, G

What types of control are epilepsy surgery patients seeking? An ethical analysis

Ford, P

Beyond mere symptom relief: Patients’ values and goals in deep brain stimulation for treatment of Parkinson disease

Kubu, CS

André-Barbeau3C

Care ethics as a guide to the process of multiple sclerosis diagnosis Krahn, TM

Brain injury and the continuum of care: Toward a better model of chronic care

Lanoix, M

Family perspectives on life-sustaining treatment in the vegetative state: A qualitative interview study

Kuehlmeyer, K

12:00-1:00 Main Lobby Lunch

1:00-2:00 Jacques-Genest Placebos without deception Kirsch, I

2:00-2:20 Main Lobby Break and Poster Viewing

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PANEL: Handle with care: Tackling the unforeseen consequences of translational neuroscience

Kimmelman, J, Robert, J, Zimmerman, E, Forlini, C

Room 2554B

Mental disorders and autonomy: Advance directives in psychiatry Jox, RJ

Preferences for instructional or proxy advance directives in mental health: A mixed methods study

Ambrosini, DL

Identity and consent in dementia research Buller, T

André-Barbeau4C

The clinical treatment of depression: Ethical disconnects at the mind-brain-dose interface

de Jong, V

Ethical challenges beyond placebo induction in psychogenic non-epilep-tic seizures

Ross, L

The subconceptual role of intuition in clinical equipoise: Support from neuroscience

Braude, H

4:00-5:00 Jacques-Genest Distinctive roles for functional neuroimaging and genetic testing in the prediction, diagnosis, and prognosis of mental illness

Illes, J

5:00-5:15 Jacques-Genest Closing Remarks and Student Prizes

PROGRAM / PROGRAMMEFriday May 27th, 2011 / Vendredi le 27 mai, 2011

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La neuroéthique est une expression récemment conçue qui façonne notre compréhension culturelle de l’avancée des neurosciences. Optant pour un ton mesuré, la neuroéthique a pris racine dans le domaine de la bioéthique en grande par-tie à cause de la visibilité croissante et rapide de l’innovation des technologies.Dans cette présentation, je vais examiner ce que l’ascension de la neuroéthique représente pour les délibérations éthiques au sujet des avancées en neurologie et dans les neurosci-ences et je poserai la question à savoir si la neuroéthique représente une nouvelle discipline distincte des méthodes conventionnelles de réflexion éthique en médecine et en re-cherche. Pour ce faire, je vais examiner l’histoire de la méde-cine, en particulier l’héritage historique de Sir William Osler et son étudiant Wilder Penfield. Le premier, un Canadien de naissance, le deuxième, un Canadien par choix, font de la neuroéthique une histoire locale pour Brain Matters 2 et une importante composante de l’héritage Canadien.Dr. Fins is the E. William Davis, M.D., Jr. Professor of Medical

Ethics and Chief of the Division of Medical Ethics at Weill Cornell Medical College where he also serves as Professor of Medicine (with Tenure), Professor of Public Health and Pro-fessor of Medicine in Psychiatry. He is also a member of the Adjunct Faculty of Rockefeller University where he is a Se-nior Attending Physician at The Rockefeller University Hospi-tal. Dr. Fins is an elected Member of the Institute of Medicine of the National Academies. He was appointed by President Clinton to The White House Commission on Complemen-tary and Alternative Medicine Policy and currently serves on The New York State Task Force on Life and the Law by gubernatorial appointment. His current scholarly interests include ethical and policy issues in brain injury and disorders of consciousness, palliative care, research ethics in neurology and psychiatry, medical education and methods of ethics case consultation. He is a co-author of the 2007 Nature paper describing the first use of deep brain stimulation in the mini-mally conscious state.

Dr. Joseph Fins est Professeur d’éthique médicale E. William Davis, M.D. Junior et Chef de la Division d’éthique médicale, ainsi que Professeur de médecine, Professeur de santé pub-lique et Professeur de médecine en psychiatrie au Collège Médical Weill. Il est de plus membre invité et médecin sénior à l’Hôpital Universitaire Rockefeller à New York aux États-Unis. Dr. Fins est membre élu de l’Institut de Médicine des Académies Nationales. Il a été nommé par le président Bill Clinton à la Commission de la Maison Blanche sur les Poli-tiques de la Médecine Complémentaire et Alternative et il a été nommé par le Gouverneur Général et siège présente-ment sur New York State Task Force; Life and the Law. ses intérêts de rechercehs actuels comptent les enjeux éthiques et les politiques vis-à-vus les lésions cérébrales et les troubles de la conscience, les soins palliatifs, la recherche en éthique en neurologie et la psychiatrie, l’enseignement médical, et les méthodes de consultation de cas éthiques. Il est co-auteur de l’article paru dans Nature en 2007 décrivant la première utilisation de la stimulation cérébrale profonde dans l’état de conscience minimal.

Neuroethics is a recently coined phrase that is shaping our cultural understanding of advances in neuroscience. Caution-ary in tone, neuroethics has taken hold in the bioethics com-munity, in large part, because of the increasingly visible and fast pace of technological innovation.

In this talk, I will consider what the rise of neuroethics means for our ethical deliberations about advances in neurology and neuroscience and ask whether or not neuroethics is novel and distinct from more conventional sorts of ethical inquiry in medicine and research. To do this I will turn to the history of medicine, and in particular, the historical legacy of Sir Wil-liam Osler and his student Wilder Penfield. The former, a Canadian by birth, the later one by choice, makes the origins of neuroethics a local story for Brain Matters 2 and an impor-tant Canadian legacy.

Neuroethics: Made in Canada?Neuroéthique : fabriquée au Canada?

Joseph J. Fins, MD, FACP

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Selon les partisans, les preuves que la toxicomanie repose sur des bases génétiques et neurobiologiques pourraient trans-former les façons dont nous y répondons. Cette présenta-tion examine les enjeux éthiques et les questions de politique sociale soulevées par certaines utilisations possiblement in-désirables de ce type de recherche, comme par exemple, les politiques visant à l’identification et au traitement d’individus qui sont génétiquement et biologiquement vulnérables à la toxicomanie; la justification des interventions biologiques au niveau du fonctionnement et de la structure du cerveau (par ex.: neurochirurgie) pour le traitement et la prévention de la toxicomanie; l’utilisation de la recherche comme mandat pour l’usage coercitif de pharmacothérapies et des vaccins pour le traitement et la prévention de la toxicomanie ainsi que l’utilisation de médicaments pour améliorer le fonc-tionnement humain normal.

Dr. Hall est Professeur de recherche et boursier du NHMRC (National Health and Medical Research Council) en neuroé-thique de la toxicomanie au Centre de Recherche Clinique de l’Université de Queensland. Préalablement, il était Profes-seur du Politiques Publiques de la Santé, École de Santé de la Population (2005-2010); Directeur du Bureau de la Politique Publique et Éthique, Institut pour les Biosciences Moléculaire à l’Université de Queensland (2001-2005); et Directeur du Cen-tre National de Recherche en Drogues et Alcool à l’UNSW (1994-2001). Il a conseillé l’Organisation Mondiale de la Santé sur les sujets suivants : les effets de l’usage du cannabis sur la santé; l’efficacité des traitements de substitution; la qualité scientifique des essais cliniques d’héroïne en Suisse; la con-tribution de la consommation de drogues illicites au fardeau global des maladies; et les enjeux éthiques de la recherche en génétique et en neurosciences sur la toxicomanie. En 2001, il a été reconnu par l’Institute for Scientific Analysis comme l’un des individus les plus cités parmi les spécialistes des sciences sociales au cours des 20 dernières années. Il a reçu, en 2009, une bourse du NHMRC pour l’étude des enjeux de santé pub-lique, de politiques sociales, et éthiques de la recherche en gé-nétique et en neurosciences sur la consommation de drogues et la toxicomanie.

Dr. Hall is a Professorial Fellow and an NHMRC Australia Fel-low in addiction neuroethics at the University of Queensland Centre for Clinical Research. He was formerly: Professor of Public Health Policy, School of Population Health (2005-2010); Director of the Office of Public Policy and Ethics, Insti-tute for Molecular Bioscience (2001-2005) at the University of Queensland; and Director of the National Drug and Alco-hol Research Centre at UNSW (1994-2001). He has advised the World Health Organization on: the health effects of can-nabis use; the effectiveness of drug substitution treatment; the scientific quality of the Swiss heroin trials; the contribu-tion of illicit drug use to the global burden of disease; and the ethical implications of genetic and neuroscience research on addiction. In 2001 he was identified by the Institute for Sci-entific Analysis as among the world’s most highly cited social scientists in the past 20 years. He was awarded an NHMRC Australia Fellowship in 2009 to research the public health, social policy and ethical implications of genetic and neurosci-ence research on drug use and addiction.

According to advocates, evidence that addiction has a genetic and neurobiological basis will transform the ways we respond to it. This paper examines the ethical and social policy issues raised by some possibly unwelcome uses of this research, such as policies that aim to identify and treat people who are genetically and biologically vulnerable to addiction; justifying biological interventions in brain function and structure (e.g. neurosurgery) to cure addiction; being used as a warrant for the coercive use of pharmacotherapies and drug vaccines to treat and prevent addiction; and the use of drugs to enhance normal human functioning.

Wayne Hall, PhD

Anticipating Possible Adverse Social Impacts of Research in Addiction NeurobiologyAnticiper les impacts sociaux indésirables de la recherche en neurobiologie de la toxicomanie

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Dre. Farah a étudié au MIT et à Harvard et a enseigné à l’Université Carnegie Mellon et l’Université de la Pennsylva-nie. Elle est présentement Professeur de Sciences Naturelles Walter H. Annenberg et Directrice du Centre pour les Neu-rosciences et la Société de l’Université de Pennsylvanie. Les travaux de Dre. Farah couvrent plusieurs sujets en neurosci-ences cognitives dont, entre autres, la perception visuelle et la fonction préfrontale. Ses travaux actuels sont centrés sur les effets de la pauvreté dans l’enfance sur le développement du cerveau et la neuroéthique.

La psychiatrie moderne considère la maladie mentale comme un trouble du cerveau et plusieurs de ses traitements effi-caces sont biologiques. Il est donc remarquable que les di-agnostics soient entièrement basés sur des critères de com-portement et non sur des critères biologiques. Pourquoi la psychiatrie est-elle si résolument axée sur les technologies élémentaires en ce qui concerne le diagnostic? Dans quelle mesure est-ce que la neuroimagerie a contribué à la psychia-trie si ce n’est pas au niveau du diagnostic? Je vais conclure avec une revue des tentatives récentes de traduction des ré-sultats de recherche en neuroimagerie en tests diagnostics, et j’examinerai les enjeux éthiques, légaux, et sociaux engendrés par ces tentatives.

Lost in Translation: Neuroimaging in PsychiatryÉgarée dans la traduction:

la neuroimagerie en psychiatrie

Martha J. Farah, PhD

Dr. Farah was educated at MIT and Harvard, and has taught at Carnegie Mellon University and the University of Pennsyl-vania. She is currently the Walter H. Annenberg Professor of Natural Sciences and Director of the Center for Neu-roscience & Society at Penn. Dr. Farah’s work spans many topics within cognitive neuroscience, including visual percep-tion and prefrontal function. Her current work is focused on the effects of childhood poverty on brain development and neuroethics.

Modern psychiatry views mental illnesses as brain disorders, and many of its most successful treatments are biological. It is therefore remarkable that diagnoses in psychiatry are based entirely on behavioural, not biological, criteria. Why is psychi-atry so stubbornly low tech where diagnosis is concerned? In what ways has neuroimaging contributed to psychiatry, if not diagnosis? To answer these questions I will review relevant aspects of neuroimaging methods and findings and the nature of diagnostic categories in psychiatry. I will conclude with a review of recent attempts to translate neuroimaging research findings into diagnostic tests and the ethical, legal and social issues raised by these attempts.

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Dr. Elliott est Professeur au Centre de Bioéthique de l’Université du Minnesota. Originaire de la Caroline du Sud, Dr. Elliott a reçu une formation en médecine avant de com-pléter un doctorat en philosophie. Il a enseigné dans des universités d’Écosse, de Nouvelle Zélande, d’Afrique du Sud, et du Canada. Ses articles ont paru dans des publications telles Le New Yorker The Atlantic Monthly, Mother Jones, et le New England Journal of Medicine. Il est l’auteur et éditeur de sept livres, incluant Better than Well: American Medicine Meets the American Dream et White Coat, Black Hat: Ad-ventures on the Dark Side

Quand un jeune homme s’est suicidé dans le cadre d’un es-sai clinique subventionné par l’industrie pharmaceutique qui évaluait l’efficacité de médicaments antipsychotiques atypiques à l’Université du Minnesota en 2004, les critiques ont reproché qu’il avait été contraint de participer à l’étude. Peut-être ont-ils raison, mais le problème éthique est encore plus grand. Aujourd’hui, les compagnies pharmaceutiques conçoivent et analysent les essais cliniques non en fonction de la production de nouvelles données scientifiques fiables, mais plutôt pour s’assurer que leurs propres médicaments apparaissent supérieurs à ceux de la concurrence. Ces essais cliniques sont publiés dans des revues scientifiques et sont ensuite distribués par les représentants de ventes pharma-ceutiques à des fins de commercialisation. Ceci soulève la question : quand est-il éthiquement justifié de recruter des sujets humains comme participants dans les études de mar-keting?

Carl Elliott, MD, PhD

A Clinical Trial, a Suicide, and the Strange Recent History of Antipsychotic DrugsUn essai clinique, un suicide, et l’histoire récente et étrange des mé-dicaments antipsychotiques

Dr. Elliott is a professor in the Center for Bioethics at the University of Minnesota. A native South Carolinian, Elliott originally trained as a doctor before earning a PhD in philoso-phy. He has taught at universities in Scotland, New Zealand, South Africa, and Canada. His articles have appeared in pub-lications such as The New Yorker, The Atlantic Monthly, Moth-er Jones, and The New England Journal of Medicine. He is the author or editor of seven books, including Better than Well: American Medicine Meets the American Dream and White Coat, Black Hat: Adventures on the Dark Side of Medicine.

When a young man committed suicide in an industry-spon-sored clinical trial of atypical antipsychotic drugs at the Uni-versity of Minnesota in 2004, critics charged that he had been coerced into the study. They may be right, but the ethical problem is even larger. Today pharmaceutical companies are designing and analyzing clinical trials not to produce reliable scientific data, but to ensure that their own drugs look supe-rior to the competition. These trials are published in peer-reviewed scientific journals and distributed by drug reps as a way of marketing the drugs. Which raises the question-when is it ethically justified to enroll human subjects in marketing studies?

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Placebos Without Deception Placébos sans déception

Irving Kirsch, PhD

Dr. Kirsch est Professeur Émérite à l’Université de Hull et de l’Université du Connecticut. Il a publié 10 livres et plus de 200 articles de revues scientifiques et chapitres de livres sur les effets placébo, les médicaments antidépressifs, l’hypnose, et la suggestion. Ses méta-analyses sur l’efficacité des an-tidépresseurs ont été largement couvertes dans les médias internationaux et ont influencé les directives officielles pour le traitement de la dépression au Royaume-Uni. Son livre The Emperor’s New Drugs: Exploding the Antidepressant Myth a été publié au Royaume-Uni par The Bodley Head, une division de Random House, et par Basic Books aux États-Unis. Il a aussi été publié en japonais et en français, et une édition polonaise est présentement sous presse.

Les placébos produisent des bénéfices cliniques considérables pour un bon nombre de maladies, dans certain cas produisant des effets rivalisant avec ceux des médicaments actifs et ce, sans les risques d’effets secondaires associés avec ceux-ci. Le problème éthique repose sur la conviction que la déception est nécessaire pour que le placébo fonctionne dans la pra-tique clinique. Après tout, y-aurait-il un effet placébo si les patients savaient qu’ils recevaient un placébo? Dans cette présentation, je présente de nouvelles données indiquant que cette croyance commune est fausse. Ces données montrent comment les comprimés placébo, offerts aux patients ou-vertement et sans déception implicite ou explicite, peuvent produire d’importants bénéfices cliniques.

Dr. Kirsch is professor emeritus at the University of Hull and the University of Connecticut. He has published 10 books and more than 200 scientific journal articles and book chapters on placebo effects, antidepressant medication, hypnosis, and suggestion. His meta-analyses on the efficacy of antidepres-sants were covered extensively in the international media and influenced official guidelines for the treatment of depression in the United Kingdom. His book, The Emperor’s New Drugs: Exploding the Antidepressant Myth, was published in the UK by The Bodley Head, a division of Random House, and by Basic Books in the US. It has also been published in Japanese and French, and a Polish edition is currently in press.

Placebos produce substantial clinical benefit in a number of conditions, in some cases rivaling the effects of active medica-tions, and they do so without the side effect risks associated with active drugs. The ethical problem is the presumption that for placebos to work in clinical practice, deception is required. After all, would there be a placebo effect if patients knew they were getting placebo. In this presentation I pres-ent new data indicating that the commonly held presump-tion is wrong. These data show how placebo pills, given to patients openly and without either explicit or implicit decep-tion, can produce substantial clinical benefits.

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Judy Illes, PhD

Dre. Judy Illes est Professeur de Neurologie et Chaire de Recherche du Canada en Neuroéthique à l’Université de Colombie Britannique. Elle est Directrice du National Core for Neuroethics (La Neuroéthique) à l’Université de Co-lombie Britannique, et membre de la Faculté du Brain Re-search Centre de l’Université de Colombie Britannique et du Vancouver Coastal Health Research Institute. Elle détient aussi des postes affiliés à l’École de Santé Publique et l’École de Journalisme de l’Université de Colombie Britannique, et au département de Sciences Informatiques et Ingénierie à l’Université de Washington à Seattle, WA, É-U.Les recherches de Dre. Illes se concentrent sur les défis éthiques, légaux, sociaux, ainsi que sur les politiques spéci-fiques à l’intersection des neurosciences et de l’éthique bio-médicale). Son livre le plus récent, le Oxford Handbook of Neuroethics (Presses de l’Université Oxford ), sera publié en 2011. Dre. Illes est également la plus récente ex-présidente du Comité sur les femmes dans les neurosciences mondiales (WWN) de l’Organisation internationale de recherche sur le cerveau (IBRO), et une représentante Canadienne pour le National Academy of Sciences/IBRO US-Canada Committee.

Peu de disciplines propulsent des changements fonda-mentaux aussi rapidement que la science et la médecine. Cette conférence portera sur les possibilités grandissantes d’obtenir des empreintes personnelles à partir de l’imagerie du cerveau et des tests génétiques. Quelles sont les con-séquences des avancées au niveau de la compréhension des individus en tant qu’êtres biologiques pour le cerveau et le bien-être mental ainsi que pour la société? Les réponses à de telles questions se trouvent dans l’équilibre délicat entre la connaissance, l’autonomie ainsi que les valeurs du passé, du présent et de l’avenir.

Distinctive Roles for Functional Neuro-imaging and Genetic Testing in the Predic-tion, Diagnosis, and Prognosis of Mental IllnessDes rôles distincts pour la neuroimagerie fonctionnelle et les tests génétiques pour la prédiction, le diagnostic, et le pronostic de la maladie mentale

Few disciplines bring about fundamental changes as rapidly as science and medicine. This lecture will focus on the ever increasing possibilities to acquire signatures of the self from brain imaging and genetic testing. What are the implications of new advances for understanding people as biological be-ings, for brain and mental well-being, and for society? The an-swers to such questions lie in the delicate balance between knowledge, autonomy and values in the past and future, and the here and now.

Dr. Judy Illes is Professor of Neurology and Canada Research Chair in Neuroethics at the University of British Colum-bia. She is Director of the National Core for Neuroethics at UBC, and faculty in the Brain Research Centre at UBC and at the Vancouver Coastal Health Research Institute. She also holds affiliate appointments in the School of Population and Public Health and the School of Journalism at UBC, and in the Department of Computer Science and Engineering at the University of Washington in Seattle, WA. USA. Dr. Illes’ research focuses on ethical, legal, social and policy challenges specifically at the intersection of the neurosciences and bio-medical ethics. Her most recent book Oxford Handbook of Neuroethics (Oxford University Press) is forthcoming in 2011. Dr. Illes is also the immediate past Chair of the Com-mittee on Women in World Neuroscience (WWN) for the International Brain Research Organization (IBRO), and a Ca-nadian representative to the National Academy of Sciences/IBRO US-Canada Committee.

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PANELDeep brain stimulation for neuropsychiatric disorders -Towards ethically and legally responsible use in a vulnerable patient population

Authors: Fins, JJ, Galert, T, Kubu, CS, Mayberg, HS, Merkel, R, Nuttin, B, Schläpfer, TE, Sturm, V

Introduction (Schläpfer, TE)

Deep brain stimulation (DBS) refers to the delivery of electrical current to subcortical brain regions by means of permanently implanted electrodes connected to a neurostimulator. High-frequency stimulation has become the treatment of first choice for tremor associated with Parkinson’s disease and other neurological disorders. Since several years now DBS is being tested in psychiatric disorders as well, because the high number of treatment refractory psychiatric patients creates a desperate need for new therapeutic options. Early attempts at exploring the potential of DBS for treating psychiatric disorders were made in the 1990s in patients with severe and treatment-resistant obsessive-compulsive disorder (OCD). Different regions in the brain are currently studied as possible targets for DBS in resistant major depression. Further neuropsychiatric conditions presently considered for treatment with DBS include addictive disorders like alcohol dependency, anxiety disorders, and Tourette-syndrome. These attempts to use DBS in psychiatry are subject to a high degree of scrutiny, not least because

they are seen by many as an unwelcome resurgence of psychosurgery. Although some of these fears may clearly be dispelled since they pertain to obsolete neurosurgical methods, there are other concerns related to the use of DBS in psychiatry deserving of careful consideration. A wide range of such concerns pertaining to regulatory, ethical, legal and methodological issues will be addressed in the proposed panel.

All presenters of this panel are members of an interdisciplinary and international project on “Deep Brain Stimulation in Psychiatry – Guidance for Responsible Research and Application”. The project group, which has been established in 2008 with a three-year grant from the Volkswagen-Foundation (Hanover, Germany), is composed of experts from the relevant clinical disciplines neurosurgery, psychiatry, neurology and neuropsychology as well as experts in medical law and ethics. As the project is now in its final stage, the panel should provide an opportunity to discuss some of its research results with the international neuroethics community.

Misuse of the FDA’s humanitarian device exemption in deep brain stimulation for obsessive compulsive disorder (Fins, JJ)

In 2009, the U.S. Food and Drug Administration (FDA) granted a humanitarian device exemption (HDE) for the use of a DBS device in the “treatment” of refractory obsessive compulsive disorder (OCD). The HDE regulatory pathway has been established to foster the development of devices for the treatment of uncommon conditions which would not yield market returns for device manufacturers when balanced against the high research and development costs in the standard approval process. It will be argued that the HDE has been misapplied in the case of DBS for OCD. It would have been feasible and more appropriate to assess the intervention’s safety and efficacy in a clinical trial of suitable size. Bypassing the rigors of such trials puts patients at risk, limits opportunities for scientific discovery, and gives device manufacturers unique marketing opportunities. By reviewing the HDE approval of DBS in OCD, we offer a cautionary tale which highlights some general problems of translating innovations in neurotechnology into psychiatric patient care.

With autonomy comes responsibility: Reflections on patients, professionals and DBS (Merkel, R)

Autonomy is a complex and multilayered concept. Ethicists and legal philosophers usually distinguish between the notion of moral autonomy and that of personal autonomy where “moral autonomy” refers to a capacity to subject oneself to objective moral principles whereas “personal autonomy” designates a value-neutral ability of individuals to self-govern any aspect of their existence they deem

7:30-8:30 BREAKFAST AND POSTER VIEWING

8:30-8:45 OPENING REMARKS

8:45-9:45 PLENARY SPEAKER JOSEPH FINS

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THURSDAY MAY 26th

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important according to whatever goals or desires they choose or have. In both these conceptual spheres we have come to further differentiate, among others, between autonomy as a legal right, as a normative ideal, and as a set of basic factual capabilities. All of these notions bear on issues raised by DBS. This holds for the question of who is entitled to consent to the surgical intervention (under what circumstances and risks and to what medical or personal ends) as well as for the problem of how to adequately account for autonomy concerns of the person after the intervention which, after all, may turn out to exhibit a considerably modified personality compared to the one who previously consented. We will have to disentangle all these (and more) conceptual aspects of “autonomy”, link them to various normative principles and rules by which they are, or should be, governed, and discuss their relevance for neuropsychiatric applications of DBS.

Assessing personality changes after psychiatric DBS (Galert, T) One of the most feared effects of surgical brain interventions in general is that afterwards a person may no longer be the person he or she used to be before surgery. Several reports of specific personality changes in patients who received DBS for Parkinson’s disease notwithstanding, little is known about the possible impact of DBS on personality. A better understanding of this impact is particularly crucial for DBS in psychiatric disorders. If one assumes that the successful treatment of a severe psychiatric condition necessarily implies a modification of the personality of the patient, then DBS induced personality changes should not only be viewed as risks but also as possible benefits. The paper will address the complex set of conceptual, empirical and ethical questions which any appropriate risk-benefit-assessment for psychiatric applications of DBS has to answer: What constitutes a change of personality and in which way is it different from other kinds of psychological sequelae an intervention may have? Which is the best methodological approach for the detection and description of personality changes after DBS? How can we tell desirable from undesirable personality changes? Is there reason to assign a special normative status to personality changes as compared to other kinds of possible adverse effects of brain surgery?

10:20-12:00 CONCURRENT SESSIONROOM 255

The ethics of ADHD diagnosis and stimulant drug treatment: Integrating children’s experiences into public debate and clinical practice

Author: Singh, I

This presentation addresses the social and moral profile of ADHD children in the UK, as compared with ADHD children in the US. It is based on interviews with over 150 children in the US and the UK. Focusing on stigma and moral responsibility, the talk examines the harms and benefits of ADHD diagnosis in the context of culturally specific attitudes towards ADHD and towards diagnosed children. A model that captures the dynamic interaction between individual biological dispositions and environmental influences is proposed, to explain why ADHD, as a problem with self-control, may take on a different look and feel across different contexts. Implications for the clinical management of children with ADHD behaviors are discussed.

Misrepresentation of neuroscience data gives rise to misleading conclusions in the media: The case of ADHD

Auteur: Gonon, F

Using the case of attention deficit hyperactivity disorder (ADHD), we identified three types of misrepresentation inside scientific articles. The first relies on prominent inconsistencies between results and claimed conclusions and was observed in two scientific reports dealing with ADHD. Only one out of the 61 media articles echoing both reports adequately described the results and, thus questioned the claimed conclusion. The second type of misrepresentation consists in putting a firm conclusion in the summary while raw data that strongly limit the claim are only given in the Results section. To quantify this misrepresentation we analyzed the summaries of all articles asserting that polymorphisms of the gene coding for the D4 dopaminergic receptor are associated with ADHD. Only 25 summaries out of 159 also mentioned that this association confers a small risk. This misrepresentation is also observed in most media articles reporting on ADHD and the D4 gene. The third misrepresentation consists in extrapolating basic and pre-clinical findings to new therapeutic prospects in inappropriate ways. Indeed, analysis of all ADHD-related studies in mice showed that 23 % of the conclusions were overstated. The frequency of this overstatement was positively related with the impact factor of the journal. In conclusion, data misrepresentations are frequent in the scientific literature dealing with ADHD and contribute to the appearance of misleading conclusions in the media. In synergy with citation distortions and publication biases they influence social representations and bias the scientific evidence in favor of the view that ADHD is primarily caused by biological factors.

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6Evidence for treatment efficacy on advocacy websites for neurodevelopmental disorders: The good, the bad, and the irrelevant

Authors: Di Pietro, NC, Whiteley, L, Mizgalewicz, A, Illes, J

The Internet has become a major source of health-related information and support for parents of chronically sick children. The websites of advocacy groups that provide these services are especially popular, but the nature and quality of treatment information they provide has not been examined. Thus, in a two-part study we evaluated information about treatment products and services

on popular advocacy websites for three common neurodevelopmental disorders: cerebral palsy (CP), autism spectrum disorder (ASD) and fetal alcohol spectrum disorder (FASD). In Di Pietro et al. (2011) we reported that advocacy websites provide a plethora of information about a wide variety of treatments, and that despite disclaimers stating that websites were not evaluating the products listed, they were overwhelmingly encouraging. Here, we discuss our findings from the second phase of the study, which examined the evidence used to support claims about the safety and efficacy of treatments featured on these websites. Websites typically did not cite scientific research in support of treatment claims; instead, a range of rhetorical strategies were used to imply scientific support. When citations were given, a surprising number (approximately 20%) were incomplete, non-scientific, or not relevant to the citation context. Our findings highlight the need for more accurate, evidence-based health information about best treatment practices for children living with neurodevelopmental disorders. They also raise difficult questions about appropriate concepts of evidence for non-scientific, yet highly expert, stakeholders and about the role of advocacy groups in providing and evaluating information.

10:20-12:00 CONCURRENT SESSIONROOM ANDRÉ-BARBEAU

Generating genius: A critical examination of how an Alzheimer’s drug has become a “cognitive enhancer”

Authors: Wade, L, Forlini, C, Racine, E

Donepezil, an acetylcholinesterase inhibitor designed to treat Alzheimer ’s disease (AD), has been widely cited in media and bioethics discourses as having the potential

to improve the cognitive ability of healthy individuals (cognitive enhancement; CE). Both literatures have made this claim largely in reference to the results of a single study (Yesavage et al. 2002). However, a recent review of the study concluded that there is insufficient evidence to support using donepezil for CE (Repantis et al. 2010). We critically examine the reporting of an enhancement effect in Yesavage et al.’s study by print media and bioethics literature, analysing: (1) how the methods and results of the study were translated in both discourses; (2) whether ethical issues were raised in direct response to the study or in discussions of CE generally; and, (3) whether the opinions of experts and authors quoted support the use of donepezil for CE. Preliminary analysis shows that: (1) media and bioethics articles often overstate the results of the original study; (2) more ethical issues are raised in discussion of CE generally than with respect to the Yesavage et al. study; and, (3) more opinions in favour of CE than against are presented, though a sizeable number of opinions warn of its side-effects or greater implications. Inaccurate translation and reliance on expert opinions emphasizes the perceived social benefit of increased intellect, bolstering a bioethics and policy debate and fuelling potentially problematic social conceptions of what constitutes “disabled”, ”normal”, and “enhanced” cognitive function.

Memory modification technologies and child soldiers

Author: Randall, C

Many soldiers return from combat with PTSD or other psychiatric problems as a result of traumatic experiences in war. Research on memory modification technologies (MMTs) is now underway and may soon provide a means to blunt the emotional impact of those memories, or remove them entirely. When MMTs become available, those who have suffered traumatic experiences are likely to be most in need of such technologies. For this reason, I want to examine the ethical implications of using MMTs to alter traumatic memories in general, and the memories of child soldiers in particular.I will discuss several reasons why soldiers might have an obligation to maintain their memories of war. I suggest that even if soldiers in general do have such an obligation, child soldiers would not have the same obligation because they are not capable of making the autonomous decision to engage in warfare. Therefore, it may be permissible for children to use memory modification technologies to remove or blunt the harmful memories they obtained under coercion. Blunting traumatic memories may bring the emotional impact to a manageable level so that the children are better able to work through those memories in therapy. MMTs also raise the issue of identity and whether it is ever permissible to alter or remove a memory. We also have to ask who can give consent for MMTs to be used on

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child soldiers. Overall, MMTs may have great potential to alleviate the burden of traumatic war memories on child soldiers and allow them to live fuller and healthier lives, but there are many ethical issues implicit in the use of these technologies.

Legitimating or stigmatizing? Neuroimages and the brain disease model of mental illness

Authors: Buchman, DZ, Whiteley, L, Borgelt, E, Illes, J

Healthcare providers, advocacy, and government organizations frequently promote a brain disease model of mental illness as a way to reduce stigma. Yet recent research suggests that brain disease explanations do not effectively decrease stigma, and may be associated with increased social distance and fear. Neuroimaging research in psychiatry that seeks to differentiate ‘normal’ from ‘abnormal’ brains is often cited in support of a brain disease model. The drive to translate neuroimaging research into clinical tools has been accompanied by similar arguments that the implied neurobiological framework will decrease the blame and moral failing often attributed to individuals with mental illnesses. Here we report on in-depth interviews of adults living with major depression and bipolar disorder, gathering their perspectives on the potential application of neuroimaging to prediction, diagnosis, and treatment. Participants reported a keen interest in using neuroimages to communicate their experience, many hoping that an ‘objective’ representation of mental illness would legitimate and de-stigmatize their condition. These hopes reflect the controversial rhetoric used to promote a brain disease model of mental illness, and present important challenges for communication and research. Across the trajectory of neuroimaging research, clinical practice, outreach and education, there is thus a need for awareness that people living with mental illness may have high expectations about the social impact of neurobiological explanations. Our findings also highlight the need for further research into the interaction of patient expectations, provider communications, and public perceptions, and how this interaction affects the unstable implications of neuroimaging ‘evidence’ for mental illness.

2:20-4:00 CONCURRENT SESSIONROOM JACQUES-GENEST

PANELChronic disorders of consciousness: Envisioning an ethical guidance

Authors: Jox, RJ. Bernat, JL, Owen, AM, Racine, E

Chronic disorders of consciousness are one of the most controversial topics of clinical neuroethics. In the face of dynamic neuroscientific research efforts that challenge traditional beliefs and practices, an ethical evaluation is clearly needed. Epidemiological studies have shown that misdiagnosis is still exceedingly high, that the prognosis varies considerably whether it is a truly vegetative state or a minimally conscious state, and that rare instances of late recoveries complicate prognostication. Functional brain imaging has been applied to demonstrate awareness in these conscious patients, and to establish communication by using mental imagery paradigms. Novel treatment approaches are explored to induce or improve awareness, in particular deep brain stimulation. As these are pioneer studies in few selected patients, there is debate on how these experimental data should translate into clinical practice. In addition, the ethical discourse on end-of-life decisions has become more complex in the light of these neuroimaging data. Beyond the expert debate, however, there is public misunderstanding and miscommunication between researchers, clinicians, caregivers, ethicists and the public. Therefore, we urgently need an ethical guidance that summarizes the up-to-date knowledge on disorders of consciousness and their ethical implications. Previously published targets of the research agenda should be assessed and projected into the future. The interests, needs and attitudes of the stakeholders (e.g. patients, relatives, health care professionals, public) should be expressed and brought together. In this panel workshop we plan to address these issues and initiate a process leading to such an ethical guidance.

Introduction: Current challenges in disorders of consciousness (Racine, E)

To frame the panel presentations and subsequent discussion, this brief introduction will present key questions in areas such as research, diagnosis, public understanding and international collaboration.

Clinical issues: Terminology, diagnosis, prognosis, and treatment (Bernat, JL)

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6Coma, vegetative state, and minimally conscious state are clinical syndromes defined by levels of wakefulness and awareness. As clinical syndromes, they encompass a spectrum of severity and differing pathologies. Diagnostic error can arise when clinicians fail to detect evidence of awareness when it is present. Because signs of awareness may be difficult to detect in patients with severe brain damage, diagnostic error is common. Studies of functional neuroimaging in some clinically vegetative patients after traumatic brain injury have shown evoked changes in regional brain blood flow that have been interpreted as showing “wilful modulation of brain activity” implying the presence of awareness that was undetectable on clinical examination. Prognostic determination in chronically unconscious patients is complicated because clinical syndromes encompass a collection of differing severities, pathologies, and lesion distributions. Prognosis by pathology and lesion extent usually is more accurate than by clinical syndrome. The subset of patients in a vegetative state after traumatic brain injury who demonstrate “wilful modulation of brain activity” may have a better prognosis for recovery of awareness than those without it. The appropriate treatment of chronically unconscious patients is to maximize their function by care in specialized neuro-rehabilitation units. Thereafter, if a patient remains in a vegetative or minimally conscious state, the ethically correct decision about the aggressiveness of treatment usually is to determine and follow the true wishes of the patient as communicated by the lawful surrogate decision maker using proper standards of surrogate decision making.

Brain imaging: Promises and limitations (Owen, AM)

Our ability to detect awareness in others is determined, not by whether they are aware or not, but by their ability to communicate that fact through a recognised response. This problem exposes a central conundrum in the study of the vegetative state and other populations of patients in whom responsively is severely compromised. From this perspective, I will contrast those circumstances in which fMRI data can be used to infer awareness in the absence of a reliable behavioural response, with those circumstances in which it cannot.

Social issues: Significant others and the interests of society (Jox, RJ)

The perspectives of clinicians and neuroscientists on disorders of consciousness are hard to reconcile with that of nurses, therapists and family caregivers. The discrepancies often lead to tensions, conflicts and lawsuits. In a qualitative interview study with nurses and family caregivers, we have seen that these stakeholders have a totally different understanding of the disease than physicians and regard the patients not as ill, but as disabled ones who may well interact and communicate with them on a nonverbal level.

The interests of these professional and family caregivers have to be explicated in order to allow an ethical judgment on how far they can influence treatment decisions. On a societal level, it is important to consider utilitarian and virtue ethics approaches that may look at social cohesion, financial burden, and respect towards vulnerable people. This presentation widens the ethical scope beyond the patient-physician relationship and the research issues and focuses on the ethical implications on a social and public health level that have to be part of a comprehensive ethical guidance on this issue.

2:20-4:00 CONCURRENT SESSIONROOM 255

Has cooling changed things for the asphyxiated term newborn: Ethical perspectives

Author: Shevell, M

The moderately to severely asphyxiated term newborn is at-risk for an extensive range of subsequent neurodevelopmental disabilities. At times, early indicators evident at birth and in the first days of life may strongly suggest that eventual impairments may be sufficiently severe to preclude consideration of an eventual autonomous independent existence in conjunction with considerable medical fragility. This may lead to consideration of the withdrawal of treatment (e.g. intubation and ventilation) that may then lead to an early anticipated death. Until recently, no acute medical therapeutic modalities existed that could potentially modify eventual outcomes in this setting. However cooling, either head alone or total body, has been shown prospectively in a subset of asphyxiated term newborns to alter outcome. Rapidly implemented, and now widely considered a standard of care, cooling can conceivably be considered to have altered ethical practice in several domains to be considered in this presentation. Firstly, should therapeutic cooling be restricted only to those asphyxiated infants meeting the strict inclusion and exclusion criteria of published studies or should its use be widely disseminated beyond this core group? Secondly, cooling as an intervention may have delayed, in a temporal way, consideration of the withdrawal of care to a point at which cardiorespiratory systems may have recovered sufficiently to enable longterm survival. Thus, has paradoxically an intervention meant to improve outcomes led to an enhanced morbidity amongst some survivors? Background and sample cases capturing this dilemma together with potential medico-ethical criteria for initiating a novel therapeutic approach will be discussed.

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The ethics of sham surgery arms in neurosurgical research - A neurosurgeon’s perspective

Author: McDonald, P

Novel neurosurgical therapies are often adopted into widespread use without the same rigorous study required of a new drug-based therapy. This has led to calls for more randomized controlled trials (RCTs) in neurosurgery, for both new procedures, and ones already in use. Over the last decade, there have been a number of RCTs in neurosurgery, mainly in the treatment of Parkinson’s disease, that have utilized a placebo or sham arm as a control group, in order to avoid a confounding “placebo effect”. The invasiveness of the sham arm has ranged from drilling holes in the skull to passing catheters deep into the brain and instilling saline. Many in the neurology and neurosurgery community have argued for more sham surgery controls in neurosurgical research.This paper will give an overview of the history of surgical innovation, as well as the use of sham surgery arms in surgical research, with an emphasis on their use in neurosurgery. Although the need for more rigour in the evaluation of novel neurosurgical procedures cannot be disputed, I argue that the use of sham surgery controls is neither methodologically necessary nor ethically acceptable for the following reasons: first, questions regarding efficacy can be answered without the use of a sham arm, second, the placebo effect is overstated, third, the risk of a sham arm is too high, fourth, patients are prone to the therapeutic misconception and hence consent may not be valid, and finally, the use of deception puts the neurosurgeon in an ethically untenable position.

The ethics of neurosurgical innovation: What does the evidence say?

Authors: Karpowicz, L, Bell, E, Bernstein, M, Racine, E

Surgical innovation is a grey zone between research and clinical care, thus falling beyond most research ethics regulations and the purview of mainstream clinical ethics. Following a preliminary review of the normative ethics literature on surgical innovation, we have identified five major categories of ethical issues associated with this practice: oversight, patient autonomy, conflicts of interest, assessment of innovation, and surgeons’ training and education. These ethical issues warrant a thorough examination because the practice of surgical innovation not only affects stakeholders (e.g., patients, health care providers), but is also an important force driving the development of neurosurgery. Despite a range of

normative positions regarding the ethical acceptability of surgical innovation, determining which ones are grounded in the best ethical reasoning can be challenging. Indeed, there are currently no methods for systematically analyzing and evaluating the evidence (i.e., ethical analysis or argument) in favour or against each position put forth in the literature. However, ethical guidance for neurosurgical practices should be based on high quality evidence, thus paralleling evidence-based medicine. In sum, we will review the ethical landscape of neurosurgical innovation while addressing the need to assess the level of evidence in the normative ethics literature.

2:20-4:00 CONCURRENT SESSIONROOM ANDRÉ-BARBEAU

Personal identity: The promise and threat of deep brain stimulation

Author: Baylis, F

Deep brain stimulation (DBS) sometimes results in acute psychological and personality changes. For this reason, it has been suggested that DBS threatens personal identity. This depiction of DBS may be accurate for some patients, for example, patients with Parkinsons Disease or epilepsy where DBS is used to treat tremors. But what about patients with severe depression or obsessive compulsive disorder where a personality change is not a ‘possible unwanted side-effect’, but is the ‘goal of treatment’?In this presentation, I propose an account of personal identity that is thoroughly relational, and makes transparent the ways in which persons are constituted in and through their personal relationships and public interactions. On this view, persons are interdependent beings and so it is that a person’s identity is informed by her personal relationships characterized by varying degrees and kinds of intimacy and interdependence. Specifically, I develop an account of relational identity as a dynamic socially, culturally, and politically situated communicative activity based in narrative and performance.

I then critically examine the impact of DBS on relational identity with particular attention to the fact that some psychological and personality changes are intended, desired and desirable, both from the perspective of the patient and those with whom she interacts. In closing, I suggest that DBS may be a promising or a threatening intervention. What matters from a patient perspective are the ways in which she is able (or not) to construct and maintain her personal narrative in concert with close and distant others.

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6Changing personality through brain interventions: On the elusive normative impact of being oneself

Author: Clausen, J

Brain interventions, most recently especially deep brain stimulation, are held to be ethically problematic because of their potential to alter the personality of the patient. Some ethicists frame this issue as a question of personal identity, or authenticity of the patient. This is supported by empirical data of DBS patients reporting of self-alienation e.g.: “I don’t feel like myself anymore.” This presentation will show that the different concepts of identity, personality and authenticity though interesting from a theoretical point of view –are not helpful for the ethical discussion of brain interventions for several reasons. Though there is a long lasting philosophical debate presenting a vast plurality of different concepts there is still a lot of conceptual work to be done on questions like ‘What is identity, personality and authenticity?’. The second step of investigation would have to analyse which effects of a brain intervention count as a change of identity / personality or infringement of authenticity with respect to which concept? And the third step would be ethical evaluation of these effects. However, whether an effect counts as a change of identity / personality or violation of authenticity or not, dose not determine whether it is ethically acceptable or not. Therefore, the first two steps could be set aside without any loss for the normative evaluation. In conclusion, the ethical debate of brain interventions is independent from concepts of identity, personality and authenticity and should go straight forward to the normative questions ‘What is ethically (un)problematic and why?’

Between laboratory and patient - Ethical issues in self-experimentation in neuroscience and the example of DBS

Author: Pacholczyk, A

Deep brain stimulation (DBS) offers the potential to relieve some symptoms of movement disorders and, possibly, treatment-resistant mental health problems. However, the exact underlying mechanism and effects of DBS are not yet fully known. Given the risks and the invasiveness of the electrode implantation procedure, one traditional avenue for gaining this knowledge, i.e. research on healthy participants, seems out of the question. During a 2010 conference on DBS in Warsaw, one of the neurologists reported that several neuroscientists had requested a DBS surgery. The question of whether doctors should implant willing neuroscientists with deep brain stimulators brings to our attention the fact that the

application of the neurosciences in clinical settings raises ethical questions -not only concerning the application of neuroscientific paradigms and techniques in medical practice, but also about relations between the clinician and the neuroscientist. To explore one facet of this issue, I will look at ethical concerns raised by self-experimentation and the factors that should be considered when grappling with this question, including the kind of knowledge that is likely to be gained from self-experimentation and the issues of consent and risk. I then address the issues specific to cases of self-experimentation which require the participation of another professional. I ask whether the clinician, usually concerned with the good of their patients, may have good reasons to use their expertise to enable self-experimentation.

POSTER ABSTRACTSConceptualizing untidy concepts in neuroethics: An appeal to philosophy of mind

Author: Smith, MJ

Recent debates in neuroethics have involved several untidy concepts, such as the ‘self,’ ‘consciousness,’ and ‘self-identity.’ For instance, some have questioned whether we lose our ‘self ’ if we lose our memory, the ability to plan for one’s future, or if there is dissonance between an individual’s present experience and previous conceptions of oneself. However, if we explore the ontological and metaphysical nature of a concept like the ‘self,’ one could land somewhere on a continuum where, on one end, it is believed that each individual has a continuous ‘self ’ throughout their life, and on the other it is believed that there is no self at all, perhaps similar to the view proposed by Thomas Metzinger in his monograph ‘Being No One.’ Depending on where one lands, the implications for medicine and neuroethics will look quite different. The use of concepts such as ‘self ’ and ‘self-hood’ in neuroethics makes presuppositions regarding the ontological and metaphysical status of such concepts, and thereby has the ability to have varied implications in neuroscience and neuroethics. Indeed, contemporary conceptions regarding self identity may have significant impact on the practice of medicine and bioethics, particularly surrounding the moral considerations for individuals in compromised or diminished states of consciousness, and of those affected by neuropsychiatric treatments. This presentation explores

4:00-5:00 PLENARY SPEAKER MARTHA FARAH

5:00-5:15 CLOSING REMARKS

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the reliance that neuroethics has on these untidy concepts borrowed from philosophy of mind, and evaluates what impact this reliance has on our ability to conduct coherent ethical analyses in neuroethics.

The ethics of translational research: The case of developing early diagnostics for Alzheimer’s disease

Author: van der Laan, ALIn this presentation, I will ethically reflect on the concept of translational research as a rising ideal in neuroscience research and in medical research more generally. I will discuss that the so called translational blocks that are often mentioned in literature are mostly considered as due to practical or social difficulties: e.g. lack of cooperation between basic scientists and clinicians; lack of a good infrastructure; conflicts of interest between academy and industry. Much less attention is given to epistemological differences, to the different ways of knowing and different kinds of knowledge in the different practices involved in translational research. I will claim that precisely those epistemological differences are of great importance to account for. I will illustrate this claim by describing a specific case in which a research consortium is identifying biomarkers in order to ‘translate’ Alzheimer’s pathophysiology into an accurate and early diagnosis. I show how L. is situated in a dynamic field – the Alzheimer field – with different kinds of knowledge, and of different kinds of dealing with uncertainties and knowledge. The notion of epistemic responsibility will be introduced to consider ways to understand these differences not as differences in ‘discovering the truth’, but as differences in ways knowledge is constructed for use. This notion implies that while doing translational research it is essential to deal with translational hurdles not only by removing its external obstacles, but moreover by taking responsibility for the usability and desirability of the knowledge that is being constructed.

The collaborative neuroethics of translational research: Opportunities and challenges

Authors: Naufel, SN, Helms Tillery, SI, Robert, JS

Neuroscience and neurotechnology research raise an abundance of ethical issues. These include voiced concerns associated with brain imaging, and the implications for human personhood of meddling with the ‘seat of the soul’. Recently, neuroethicists have begun to attend to emerging technologies with profound implications for understanding human beings and manipulating our capacities. Deep brain stimulation, – with its potentials to alter personality – and neural prosthetics, – which can

allow remote control of objects on the fuel of thought – are considerations here. In this poster, we reflect on our developing model of collaborative neuroethics for translational neuroscience research. We begin with the assumption that socially responsible innovation depends on anticipating developments and the moral challenges they raise. We describe a means for both scientists and ethicists to be at the heart of neuroethical deliberations, in collaboration. Our model is aspirational. Ideally, scientists have a deep understanding of the nature of new technological developments, and thereby help to constrain fanciful imaginings of the future of technologies, while offering their own value-laden concerns as citizens. And ideally, ethicists bring forth deep understanding of relevant personal and societal values, and can help exploration of the cultural dimensions of technological innovations in complex societies. Together, ideally, scientists and ethicists create the conditions for comprehensive and constructive consideration of the societal dimensions of new advances, accompanied by a credible understanding of the technologies and their possible trajectories. This poster describes our model in early-phase practice, including consideration of the challenges involved in fully realizing our aspirations for scientist-ethicist collaborations.

Placebos in clinical practice: Patterns of use and ethical guidelines

Authors: Campbell, N, Raz, A

Placebo effects are a powerful mindbody phenomenon with a specific underlying biology. Controversial and ethically tenuous, the use of placebos is central to medicine but even more pivotal to psychosocial therapies. While different professionals often confuse the definition of placebo, some physicians continue to dole out placebos as part of clinical practice. Findings from multiple studies suggest that modern physicians in multiple geographical regions such as Canada, Denmark, Germany, New Zealand, and Israel give their patients placebos outside of the research context. Our recent study, for example, found that as many as 20% of physicians in Canada report prescribing placebos in clinical practice. Furthermore, we found that psychiatrists seem to better value the influence placebos wield on the mind and body and maintain more favourable beliefs and attitudes towards placebo phenomena. The Canadian Medical Association, however, has hardly harboured a formal policy regarding the use of placebos in clinical practice. The American Medical Association, on the other hand, categorically prohibits the deceptive use of placebos in clinical practice. Herein we discuss crafting long-overdue guidelines for the use of placebos, and argue that although deception is typically objectionable on the grounds that it limits autonomy and breaches trust, non-deceptive placebos are also possible within an appropriate ethical framework.

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The neurochemical register: Explanations of mental illness and attitudes to neuroimaging

Authors: Whiteley, L, Buchman, DZ, Borgelt, E, Illes, J

Neurochemical explanations of mental illness are deeply entangled with pharmaceutical approaches to treatment, framing mental disorder as a chemical ‘imbalance’ that can be corrected with medication. Despite the efficacy of psychotropic medication for many individuals with serious mental illness, claims that drugs are specific to an ever-widening array of symptoms or disorders are often overstated, particularly in marketing campaigns. Here, we investigate the role of neurochemical explanations in the experiences of mental healthcare providers and individuals with a mood disorder diagnosis, and ask how this interacts with their attitudes to the potential future use of neuroimaging for diagnosis and treatment choice. During interviews, both providers and clients spoke about experiences with ‘trial and error’ medication, and expressed hopes that neuroimaging would improve specificity. This did not, however, represent straightforward assent to the primacy of a neurochemical explanation. Participants often separated a notion of chemical imbalance that requires drug treatment from a behavioral register in which psychosocial therapy would be desirable even if brain scans revealed a chemical ‘cause’ of disorder. Amongst both groups, ambivalence about using the effect of drugs as a diagnostic tool resonated with uncertainty about whether ‘chemical’ differences are really ‘physical’ entities that might be ‘seen in the brain’: the neurochemical register is both foundational and ontologically unstable. Our findings also emphasize the importance of the provider-client relationship in determining whether clients experienced pharmaceuticals as tools for self-shaping, or rather felt shaped by an explanatory framework that had not yet convincingly argued its case.

Ethical considerations of counselling families about neurodevelopmental delays

Authors: Gorgos, A, Ghosh, S

Predicting outcomes of children with neurodevelopmental delays is complicated by the variety of etiologies and populations involved. Children in certain groups (e.g., extremely premature) may have somewhat characteristic patterns of delay but future individual outcomes nonetheless remain unclear. Other children without a specific diagnosis or risk factor may have atypical developmental trajectories, complicating attempts at prognostication.Health care professionals who provide counseling on these neurodevelopmental issues must answer questions about

prognosis raised by the families of these children. Given the complex intrinsic and extrinsic factors affecting overall development, each child uniquely has a range of possible outcomes. Family interaction can dictate the amount of information presented. Those who tend to ask more questions, who come from higher socio-economic status or educational backgrounds, or who present themselves articulately will elicit longer and more detailed sessions about neurodevelopmental diagnoses and risks. However, receiving this level of information, rather than assisting the family, may in fact create significant stress about events that will never occur. Alternately, when professionals perceive a family as less prepared for detailed feedback, some information on outcomes may be withheld. This applies also when the professional feels uncomfortable making uncertain predictions about neurodevelopment, and equally may limit the family from obtaining adequate information about eventual trajectories.What are the ethics of withholding or releasing information about possible neurodevelopmental outcomes? How can one determine the most appropriate amount of information to share with these families? This ethical question is particularly relevant given the importance placed by families on prognostication.

Transitioning from neurological to psychiatric deep brain stimulation (DBS): Learning from the experiences of Canadian healthcare providers

Authors: Bell, E, Maxwell, B, McAndrews, MP, Sadikot, A, Racine, E

Background: DBS is an approved neurosurgical intervention for Parkinson’s disease. Over the past years, there has been growing interest in examining DBS for new indications, including in refractory psychiatric patients suffering from depression or obsessive compulsive disorder. Encouraged by early clinical trials, the potential ethics issues for the use and research of DBS in psychiatric conditions have been the subject of discussion in the disciplines of neurosurgery and bioethics. Some international ethics guidance has been generated on this topic. In order to offer a Canadian viewpoint, we examined the perspectives of healthcare providers (HCPs) working in DBS teams on ethical and social issues encountered in DBS. Methods: We recruited HCPs affiliated with major Canadian neurosurgical centres to participate in a semi structured one-on-one interview to identify and characterize potential ethical and social challenges in DBS. Results: Even in the standard practice of DBS in movement disorders, Canadian HCPs brought forward some unique perspectives about ethical and social challenges in the field. Several key ethical challenges were described in the areas of patient screening, resource allocation and long term care of patients. Emerging psychiatric uses also

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brought about a number of ethical challenges, many which have been discussed in the international guidance on this topic. Interestingly, other issues (the psychosocial context of psychiatric illness, and resource allocation challenges) were raised almost exclusively by HCPs in our study. Conclusion: This study demonstrates the presence of ethical concerns important to Canadian practitioners in current and emerging applications of DBS.

Examining discourses on brain death

Authors: Daoust, A, Racine, E

Background: Accepted by the medical community, the concept of brain death is still misunderstood by healthcare providers and the public and remains a source of controversy (President’s Council on Bioethics, 2008). This ongoing historical controversy intersects with debates/decisions about organ donation. In spite of documented practice variations regarding brain death and noted conceptual confusion, the upstream sources of variability and uncertainty in the literature have not been extensively investigated. Objectives: Examine how Canadian and American media have depicted brain death and identify factors contributing to the confusion about brain death. Methods: First, we reviewed peer literature discussing brain death to develop a rigorous content analysis approach. Second, we gathered a sample of North American media articles containing keywords “brain dead” or “brain death” available in electronic databases (Eureka & Factiva) published between 2005-2009. All media articles were systematically examined for content (e.g. definitions of brain death; criteria for determination of death; end-of-life issues; organ donation issues; colloquial uses of brain death) using the NVivo 8 software. Results: We gathered a sample of 940 articles, 55,2% (N=519) from American and 44,8% (N=421) from Canadian newspapers. Thirty-nine percent 38,9% (N=366) of the articles used brain death colloquially and 9,5% (N=90) reported the paradoxical statement that life-supports keeps the brain-dead person alive. Our observations confirm the often voiced comment that the media conveys confusing information about brain death. These results will inform strategies to address these issues, which have implications for both the public and healthcare providers.

Evidence-based ethics in imaging genetics: Is the image clear?

Authors: Palmour, N, Racine, E

Modern neuroimaging innovations have spurred discussion about current and future ethical uses of translational neuroscience within healthcare and beyond. Imaging genetics as currently practiced is an experimental strategy

using neuroimaging technology to interrogate biological processes in individuals with distinct molecular genetic variation, which in turn might mediate individual differences in behaviour and associated risk for neuropsychiatric disorders. The data from imaging and genetics diagnostics can potentially be combined to improve pre-symptomatic assessment of individuals having a large impact in the treatment and management of these patients and the rationed healthcare system. This poster presents a review of the literature in both neuroimaging and genetics, along with imaging genetics to identify the salient ethical issues at play in this emerging field. Ethical issues in neuroimaging and genetics include stigma, privacy, autonomy, beliefs and attitudes, resource allocation, translation and public understanding.We discuss whether the ethical issues have been sufficiently addressed within each domain and whether the combination of technologies changes the ethical topography. Literature searches conducted in 2008 in imaging genetics and ethics yielded no matching articles (Tairyan, 2009) however the lack of synthesized data does not mean that ethical issues are unattended. Accordingly we will address the contours of the issues and highlight the gaps in ethical coverage.

Quality of life of patients in the permanent vegetative state as assessed by caregivers

Authors: Kuehlmeyer, K, Borasio, GD, Jox, RJ

A low quality of life (QoL) of patients in the permanent vegetative state (PVS) can be an argument to discontinue life-sustaining treatment. This paper aims to examine how professionals in a long-term care setting and family caregivers assess the QoL of patients in PVS and how they conceptualize QoL. A mixed methods study was conducted, using a numeric rating scale (0-10) for QoL and semi-structured interviews with twelve family caregivers and 13 nurses. The interview transcripts were analyzed according to qualitative content analysis, using the MAXqda software. The arithmetic means in both groups were compared with a t-test. The QoL of PVS patients was rated 3 on average and there was no significant difference between the assessment by family caregivers and professionals. Related to their own QoL, family caregivers reported a lower score (NRS 6) than professionals (NRS 8), an evidence for a higher burden in family caregivers. Participants revealed that their judgments were based on processes of comparison: professionals assumed that the patients’ QoL was low compared to healthy people or the premorbid condition, but high compared to other PVS patients who didn’t receive the same excellent rehabilitative care. Family caregivers however considered the patient’s potential for improvement, which was influenced by their hopes for the patient’s eventual recovery. Discussion: Family

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6caregivers and nurses felt able to assess the QoL of PVS patients although patients are considered to be unaware. The accuracy of these judgments can not be reappraised because PVS patients are not able to communicate meaningfully.

Public funding of autism research as well as services and supports: The need for balance

Authors: Krahn, TM, Fenton, A

A significant increase in diagnosed cases of Autism Spectrum Disorders (ASDs) has forced questions concerning how to restructure current efforts to manage and meet the diversity of needs of all those affected by ASDs. In the wake of what is experienced as inadequate services and supports, some Canadian parents are using the courts to win early intervention educational programming placements for their ASD children, while others, as a ‘substitute’, are competing to enrol their ASD children in research studies.The public purse is responsible for funding almost all ASD research in Canada (as per Canadian Institutes of Health Research [CIHR]), as well as providing for some of the existing services and supports for this population. Pursuing new research is commonly a risky investment, with indeterminate benefits. While budgets for research versus services and supports are not directly linked, in this presentation we consider various reasons for why Canada should be concerned to ensure a more equitable distribution of relevant public funding within and across both sectors than has historically been the case. As such, we report data to show that CIHR-supported ASD research from the period of 2000-2008 demonstrates a bias focussed on the etiology of the condition, revealing a disproportionate emphasis on only one (i.e., Biomedical, 43%) out of the remaining three (i.e., Clinical, 44%; Population Health, 5%; Health Systems & Services, 4%) research pillars avowed by CIHR. We also report on the need for more and sustained services and supports over the life-span of all persons with ASDs.

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7:30-8:30 BREAKFAST AND POSTER VIEWING

8:30-8:45 OPENING REMARKS

8:45-9:45 PLENARY SPEAKER CARL ELLIOT

9:45-10:20 BREAK & POSTER PRESENTATIONS

10:20-12:00 CONCURRENT SESSIONJACQUES-GENEST AUDITORIUM

PANEL Neurosciences, neurodiversité et mouve-ments sociaux

Auteurs : Chamak, B, Moutaud, B, Troisoeufs, A, Jupille, J

L’identification du fonctionnement d’un individu à celui de son cerveau imprègne notre société. Le concept de neurodiversité, forgé dans le contexte de l’autisme, se généralise auprès des associations de personnes présentant un problème de santé mentale. Les mouvements associatifs faisant référence à la neurodiversité étant beaucoup plus nombreux aux États-Unis et au Canada qu’en France, nous tenterons de décrire et de comprendre ces différences. Les associations créées autour des problématiques de l’autisme, de l’hyperactivité, des troubles obsessionnels compulsifs et de la schizophrénie serviront d’exemples pour analyser l’impact des neurosciences sur les représentations et les actions des milieux associatifs.

Neurodiversité et associations de personnes autistes (Chamak, B)

Au niveau international, l’étude de la dynamique historique des mouvements des droits des personnes autistes montre que cette mobilisation est centrée sur le projet de la construction et de la défense d’une identité collective, redéfinissant l’autisme comme un autre mode de fonctionnement cognitif et non comme une maladie. Généralement, les mouvements activistes mettent

l’accent sur les aspects positifs et créateurs associés à la neurodiversité. C’est en 1999 que ce concept a été proposé par Judy Singer, dans le cadre de l’autisme, et en 2003, elle affirmait : « Nous sommes la première vague d’un nouveau mouvement de libération, la libération neurologique » (Miller, 2003). Dans ce contexte, la publicité médiatique autour des neurosciences est utilisée pour réclamer le droit à la différence.Internet a joué un rôle central dans l’émergence de la communauté autiste en favorisant les échanges et les nouvelles façons de s’auto-identifier comme autistes. L’étude du cas français met en lumière d’autres orientations. Ainsi, les membres de l’association francophone, Satedi, ont accepté et intériorisé la notion de handicap. Leurs objectifs sont d’apporter un éclairage sur le fonctionnement autistique, d’aider les personnes autistes et leurs familles, d’influencer les orientations de la recherche et les décisions politiques sur l’autisme. Tandis que le mouvement international est un mouvement social qui s’est positionné contre le modèle médical de l’autisme, Satedi coopère avec les pouvoirs publics et ne se réfère ni à la neurodiversité ni à la culture autiste.

Les formes d’engagement des associations de patients psychiatriques dans la recherche en neurosciences et ses conséquences sur les trajectoires de soin (Moutaud, B)

En France, les rôles et degrés d’implications dans la recherche médicale des associations de malades souffrant de troubles psychiatriques sont très peu connus. Pourtant, le patient psychiatrique y est aujourd’hui au centre de controverses intenses entre conceptions biologiques et psychodynamiques des troubles mentaux face auxquelles ces associations se situent et prennent position. Ces débats ne sont pas sans conséquences sur les modèles thérapeutiques valorisés et les modèles de définition et catégorisation des troubles qui les soutiennent. En bout de course, la question est de saisir en quoi ils interfèrent avec les trajectoires de soin des patients, ou du moins comment ceux-ci se positionnent face aux différentes conceptions des troubles en vigueur et comment ils les intègrent dans leurs représentations.

À partir de l’étude de la collaboration de l’Association française de personnes souffrant de troubles obsessionnels compulsifs (AFTOC) avec une équipe de neurosciences à l’hôpital de la Pitié-Salpêtrière (Paris – France), je vais retracer les formes d’engagement de l’AFTOC dans la recherche et la régulation des pratiques médicales. Ensuite, en m’appuyant sur une série de 25 entretiens collectifs et individuels avec des personnes souffrant de trouble obsessionnel compulsif, je décrirai les répercussions que ces formes d’engagement ont sur leur parcours de soin et leurs représentations du trouble. Finalement, je tenterai de rapporter l’action des associations de malades et

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7leur participation à la recherche médicale au statut des personnes souffrant de trouble mental.

Les usagers en santé mentale en France : entre le modèle médical et celui du handicap (Troisoeufs, A)

La mise en place de la sectorisation en 1985 marque le début d’une nouvelle organisation de la psychiatrie française, signe à la fois d’une véritable désinstitutionalisation et d’un nouveau regard sur la place des usagers dans la société. Les mouvements des usagers en santé mentale qui se sont développés dans les pays anglo-saxons et ailleurs en Europe ont mis du temps à s’implanter en France. Le paysage associatif français est constitué de deux mouvements qui ont la particularité de proposer des modèles référentiels différents et de ne pas faire appel au concept de neurodiversité. Le premier mouvement associatif s’est développé dans les années 90 avec le soutien des professionnels de santé en utilisant le modèle médical dans l’optique de favoriser leur participation dans le champ de la santé. Le deuxième mouvement associatif apparaît dans les années 2000 et fait référence, cette fois, au modèle du handicap. Avec l’aval des associations de familles et des associations de patients, l’État soutient, en 2005, la mise en place de « Groupes d’Entraide Mutuelle » dans le but de compenser le « handicap psychique » et de favoriser la participation des usagers à la « vie de la cité ». Que ce soit en utilisant le modèle médical ou le modèle du handicap, ces deux mouvements associatifs participent à un courant plus large d’inclusion des usagers qui semblent se distinguer de celui qui s’inspire du modèle de la neurodiversité pour prôner la valorisation de la différence.

Hyperactivité et déficit de l’attention : « ça vient d’une défaillance dans son cerveau » (Jupille, J)

Le recours à un discours naturaliste tend à modifier les représentations de l’hyperactivité et du déficit de l’attention (TDA/H) comme le montre l’analyse des arguments et revendications défendus par HyperSupers, une association de parents d’enfants hyperactifs. La requalification de la situation par la référence à un trouble conçu comme ayant une forte composante génétique et neurologique apparaît aux parents comme un moyen d’atténuer leur sentiment de culpabilité. Le diagnostic leur permet de bénéficier d’aides et transforme leur représentation en ce qu’ils appréhendent les difficultés de leur enfant comme une « défaillance du cerveau » et non comme un acte délibéré d’opposition. Une recherche menée dans un Centre Hospitalo-Universitaire parisien a permis de rendre compte de l’expérience des parents et de leurs représentations.

10:20-12:00 CONCURRENT SESSIONROOM 255

Post-market surveillance of DBS

Author: Mathieu, G

Introduction: Active implantable devices (AIMD), like deep brain stimulation (DBS), are challenging current regulatory processes. In view of its potential widespread use and complexity, DBS is a good example showing the need to assess the actual process of regulatory postmarket surveillance (PMS) practices. Problem: Unlike the standards for surveillance of drugs, devices operate in a regulatory environment having significant flaws in PMS practices (Avorn 2010). The FDA and Health Canada rely on the voluntary actions of manufacturers for reporting clinical data on adverse events or devices malfunctions. For devices like DBS, problems or unanticipated effects need to be addressed and reported in a timely manner. Objective: Our review shows underreporting from users to regulatory bodies, and to manufacturers, of adverse events. Systems depend on registries that are not efficient in calculating the incidence of adverse events, in balancing the known benefits of devices in use. But proactive PMS systems may serve to uncover new safety and reliability concerns, not easily and fully appreciated during the premarket phase (O’Shea & al 2004). PMS should also rely on systematic patient-oriented outcomes studies, to obtain provide invaluable information, and integrate new evidence on the safety and effectiveness of devices (Mathieu Bell Racine 2011). Conclusion: More rigorous and reliable follow-up systems would have a direct role in device risk management as unintended and unanticipated consequences may increase with the number of devices in real-world clinical practices. To answer some ethical issues specific to AIMDs, DBS is one example for moving towards improved PMS practices.

What types of control are epilepsy surgery patients seeking? : An ethical analysis

Authors: Ford, PJ, Yee, K, Kubu, C

Epilepsy is characterized by significant loss of bodily control and often includes a loss of awareness. People with epilepsy may have episodes of uncontrolled movements, emotions, or speech for which they have no recollection. Approximately 30% of people with epilepsy have seizures that cannot be controlled by medication. Because of their uncontrolled seizures, these individuals may be limited in their ability to participate in activities such as driving,

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showering, cooking, and sports. One potential therapy for persons with medically refractory focal seizures is neurosurgical resection of the seizure focus. Although several studies have explored the quality of life of patients after epilepsy surgery, only limited data are available related to pre-operative patient expectations and goals. Systematic exploration of these expectations and goals can elucidate the value choices faced when considering whether to have a brain surgery that may improve quality of life but also may impair cognition or other neurological functions. As part of an IRB approved research protocol, we conducted semi-structured interviews in a series of 23 individuals who were scheduled to undergo epilepsy surgery. The most common goals for surgery with respect to symptoms as well as activities and behaviours will be presented. The narratives reveal an ethical tension between themes of greater independence versus subjects’ reports of feeling significantly in control of their lives pre-surgery despite their epilepsy. These data and observations provide an opportunity to re-reflect upon the values and justifications for destructive brain surgeries that may accomplish some goals while leaving others unattainable.

Beyond mere symptom relief: Patients’ values and goals in deep brain stimulation for treatment of Parkinson disease

Authors: Kubu, CS, Ford, PJ

Deep brain stimulation (DBS), like other functional neurosurgeries, is an elective procedure in which the goal is to improve quality of life. The outcome literature demonstrates that standard symptom outcome measures may not fully capture patients’ goals for DBS. We argue for a multidimensional assessment of outcome that includes traditional symptom measures, functional measures (i.e., return to work), and individualized patient and family rated outcomes. Such a framework requires systematic exploration of patients’ goals and values associated with DBS therapy. We report qualitative and quantitative data regarding the specific behavioral goals that influenced 25 subjects in our IRB approved study to pursue DBS for the treatment of Parkinson disease. Data acquisition included standard neuropsychological measures as well as mood and personality tests. Subjects were interviewed prior to and three months following surgery. Our data indicate that subjects’ rank order of behavioral goals changes over the course of DBS treatment. The data highlight the discrepancy between standard symptom outcome measures and the shifting nature of patients’ goals, supporting the need to include both traditional symptom and patient specific outcome measures to evaluate success for an elective neurosurgical procedure. These data have clear implications for informed consent and argue for the need for a more sophisticated, multidimensional approach to measuring DBS treatment success. This will permit comparisons amongst other treatments to assess efficacy

and safety, and provide real-world behavioral indicators of functional status that are meaningful to patients. We will present a mix of quantitative and qualitative data to support our position.

10:20-12:00 CONCURRENT SESSIONROOM ANDRÉ-BARBEAU

Care ethics as a guide to the process of multiple sclerosis diagnosis

Authors: Krahn, TM

Multiple sclerosis (MS) is a chronic neurological disorder for which, despite advances with modern neuroimaging, there is still no definitive clinical test. Diagnosis is reached through a process of elimination; prognosis is uncertain; and there is as yet no cure. Most accounts in the literature on the ethics of MS diagnosis focus on either: i. a deontological approach of full disclosure and healthcare professionals’ obligations to provide information to patients, or ii. a consequentialist approach that emphasizes the effects of giving and receiving, or not giving and receiving, timely notice of relevant information. Both of these approaches tend to be driven by a common misperception that diagnosis is an event, rather than a process. Scant attention has been given to the changing relational space between patient and doctor as they journey together (or apart) through the process of diagnosis. For the healthcare provider to properly judge what of the various complex stages in her reasoning process are suitable to share is not just a matter of applying certain rules pertaining to professional duties in observance of a patient’s rights. Proper disclosure and effective communication requires discernment, tact, timing, the practice of flexible, caring responsibility and sustained attention to the particular needs of “this” patient in her own situational context. Accordingly, this presentation shows how Care Ethics is especially useful for attending to a broader swath of responsibilities (different from minimal duties) implicated in meeting patients’ overall needs for care as they negotiate the journey through uncertainty involved in MS diagnosis.

Brain injury and the continuum of care: Toward a better model of chronic care

Author: Lanoix, M

This paper examines the impact of advances in neuromedicine on the delivery of health care services. Specifically, my goal is to explore how brain injury care poses ethical challenges to the chronic care model. The increasing survival of patients with devastating brain

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injuries means that a greater number of individuals will have complex care needs for extended periods of time (Jennings, 2006). In addition, sophisticated neuroimaging techniques are showing that patients assumed to be in a vegetative state could be minimally conscious (Owen et al, 2006). These developments have implications for acute and post-acute care: standards of care must now reflect a wider array of patient prognoses. However, with long-term survival, the right to care of such patients, as advocated by Fins (2006), must be understood in a context larger than that of the acute or post-acute phases. The chronic care model of service delivery might seem promising. However, this model uses a norm of the patient as self-manager of his/her illness (Wagner et al, 2001). This is inappropriate for individuals who do not possess executive autonomy. By considering how the chronic care model could be expanded to include patients with little or no executive autonomy, I highlight some of the problematic assumptions embedded within this model. I discuss the ethical challenges posed by severe brain injury and the manner in which the chronic care model can benefit from these challenges. I conclude by presenting an alternative notion of autonomy and by briefly sketching the corresponding model of chronic care.

Family perspectives on life-sustaining treatment in the vegetative state: A qualitative interview study

Authors: Kuehlmeyer, K, Borasio, GD, Jox, RJ

Patients in the vegetative state (VS) are not competent to give or decline informed consent to treatment options. Usually, family caregivers are asked to inform physicians about prior treatment wishes of the patient. This paper aims to describe family caregivers’ attitudes towards life-sustaining treatment and to analyze what might influence their attitudes. We conducted a qualitative interview study with 12 family caregivers of 10 chronic VS patients and analyzed the transcripts according to qualitative content analysis, using the MAXqda software. Most family caregivers were willing to forego several treatment options, such as reanimation, surgery or artificial ventilation. Only two had asked for all treatment options available. The husband of one patient would have been willing to discontinue her life sustaining treatment but he wrongly supposed it was illegal. Interview partners didn’t base their attitudes on the former wishes of the patient but on the patient’s current condition. If the condition worsened, they would limit treatment. They displayed an understanding of the disease that is different from the medical perspective, interpreted the patients’ behavior as meaningful and overestimated the chance for rehabilitation. Their evaluation of the patient’s condition was influenced by their emotional bonds with the patient.

In many families existing advance directives and treatment wishes were overruled by these factors. Family caregivers interpret their role as substitute decision makers, instead of providing information about the patient’s prior wishes. They argue that living in a VS cannot be imagined unless one is affected by it.

2:20-4:00 CONCURRENT SESSIONJACQUES-GENEST AUDITORIUM

PANEL Handle with care: Tackling the unforeseen consequences of translational neuroscience

Authors: Kimmelman, J, Robert, J, Zimmerman, E, Forlini, C

As neuroscience research progresses, the goal is often to translate findings into clinical treatments, be it procedures, devices, pharmaceuticals and ultimately, healthier lives. However, the translation of neuroscience into clinical treatments has had some unpredictable consequences both from research and public dialogue ethics standpoints. The challenge here is two-fold: (1) how to predict what type of preclinical research will yield beneficial treatments and (2) how to predict what, if any, social implications the research results or treatments can have. This panel aims to raise and discuss problematic issues in translation by uniting four researchers whose respective work has examined these issues. In addition, the panel will address how unforeseen consequences should be predicted and addressed by different stakeholders in order to promote beneficial translational neuroscience and minimize harms. Dr. Jonathan Kimmelman will use the example of first in human trials to reveal challenges of translation at different points in the neuroscience research lifecycle. In light of such challenges, Dr. Jason Robert will then propose a role for bioethicists as vital contributors to the translation process. Finally, Ms. Cynthia Forlini and Ms. Emma Zimmerman will argue that social outcomes related to neuroscience research can broaden the scope of issues that are considered in the ethics of translation. Together, the panellists hope to lay the groundwork for a

12:00-1:00 LUNCH

1:00-2:00 PLENARY SPEAKER IRVING KIRSCH

2:00-2:20 BREAK & POSTER VIEWING

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fruitful discussion of improved models and best practices to mitigate the unforeseen consequences of translational neuroscience.

Subjects in early phase trials of novel agents targeting the central nervous system: Guinea pigs or patients? (Kimmelman, J)

First in human trials of novel central nervous system (CNS) agents like stem cells or neurotrophic factors involve substantial uncertainty and risk. Can such risks be justified by an appeal to therapeutic value? I have previously argued that the aims and architecture of typical early phase trials militate against a therapeutic justification. However, many commentators strongly defend such trials on therapeutic grounds, and CNS trials are generally structured in ways that are more compatible with appeal to therapeutic value. In what follows, I nevertheless argue against a therapeutic justification on the grounds that relevant CNS intervention reference classes do not support credible claims of therapeutic activity. This argument has somewhat disturbing implications, as trials involving brain delivery carry substantial baseline risk and burden. The parameters of this argument are explored in the context of specific translational trials, as are the ethical implications for the planning, design, conduct, and reporting of early phase CNS trials.

Failures of translation in neuroscience research: How can bioethicists help? (Robert, J)

Failures to translate preclinical research with non-human animals into therapeutics that work in humans are legion. For every successful attempt, there are hundreds if not thousands of failures. While the failures are expected – humans are, after all, different from non-human animals in all sorts of relevant ways – researchers and research institutions, including funders, have been seeking ways to improve translational success rates and so reduce the absolute number and the relative proportion of failures. What is missing from the growing literature assessing epistemological and methodological dimensions of neuroscience research with non-human animals is an evaluation of the ethical and other non-scientific values at stake in debates about how to maximize knowledge translation from preclinical to clinical contexts.

This presentation summarizes two of the central contributions bioethicists can make to these increasingly important debates: (1) bioethicists can provide a moral assessment of the scope and nature of failures of translation from preclinical to clinical contexts; and (2) bioethicists can engage debates about the justification of research with non-human animals, debates that involve animal rights and animal welfare considerations as well as the required

evidence base for proper risk-benefit assessment in the transition from preclinical to human subjects research in biomedicine. These two contributions are critical not only to the moral evaluation of translational research efforts, but also to any attempt to engage in upstream ‘benchside consultation’.

Social outcomes of neuroscience research: Cases and models for consideration (Zimmerman, E, Forlini, C)

The unforeseen consequences of clinical translation of neuroscience research are numerous; however, the consequences of neuroscience research loom much larger. The social implications of research have traditionally fallen into the gaps in research ethics and science communication. Neither of these fields has clearly attributed a role to the social implications of research in determining the ethical merit of a research project. With little institutional or normative guidance, it remains unclear whether, and at which point social implications should be taken into consideration. Using the examples of dual use of neuro-technologies and the off-label use of drugs by healthy students to improve cognition, we will aim to demonstrate the complexity of addressing social outcomes and make a case for giving these issues more attention. From these particular cases we will present three models for addressing social outcomes in light of the current practice and ultimately argue for a greater focus on public dialogue in combination with expert models like an advisory board.

2:20-4:00 CONCURRENT SESSIONROOM 255

Mental disorders and autonomy: Advance directives in psychiatry

Authors: Jox, RJ, Kuehlmeyer, K

Patients with mental disorders have discovered psychiatric advance directives (PAD) to direct medical treatment in crises. Psychiatrists are, however, uncertain how to handle PAD, and the ethical debate on this issue is underdeveloped. I will present the different forms of PAD, summarize the empirical literature and analyze the ethical questions. There are two major forms of PAD: (1) Patients may plan together with health care professionals how they want to be treated in crises, appoint health care proxies and anticipatorily consent to treatment, including measures of coercion (called joint crisis plans or Ulysses contracts). First trials showed that such PADs can reduce involuntary hospital admissions, violent acts and coercion

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7– and such consequences are strong arguments in favour of this form of PAD. (2) Psychiatric patients also write, in a more adversarial than cooperative manner, advance refusals of treatment (comparable to end-of-life directives), including the refusal of medication or psychiatric treatment altogether. There are almost no empirical studies on this sort of PAD. In both cases, the ethical question is whether precedent autonomy of competent persons overrides current autonomy of incompetent patients, and how the duty of benevolence relates to this. There is a strong case that the level of competence (the quality of autonomy) is ethically more relevant than the time the autonomy is expressed (the recency of autonomy). But moral intuition cautions against advance refusals in psychiatry, mainly when there is a risk of suicide or of harm to others. Procedural safeguards should be installed to ensure competence, voluntariness, professional consultation and documentation of reasons while writing an advance refusal of psychiatric care.

Preferences for instructional or proxy advance directives in mental health: A mixed methods study

Authors: Ambrosini, DL, Crocker, A, Latimer, E and Israël, M

Psychiatric advance directives (PADs) are instructional documents allowing individuals to detail their treatment preferences in the event of future mental incapacity. Mandates in case of incapacity are proxy directives used in Québec whereby a mandator (maker) appoints a mandatary (proxy) to make decisions related to administration of property and finances and/or personal care matters. Little is known about the prognostic factors that lead certain individuals with particular forms of mental illness to choose instructional or proxy directives. A mixed methods study was used to examine prognostic factors, including autonomy, empowerment, and recovery, associated with choice of document among 65 individuals with schizophrenia, depression, and bipolar disorder respectively. Phase I consists of qualitative interviews, PAD completion, and a follow-up interview with 6 participants. In Phase II, 59 participants completed questionnaires measuring autonomy, empowerment, and recovery, completed a PAD or mandate, and returned at three months for follow-up measures. Phase III involved interviews among 6 participants who completed a PAD at phase II. We found that the majority of participants preferred a PAD (76%) to a mandate (24%). Logistic regression analyses reveal that among the factors predicting choice of document included type of mental disorder, sex, level of insight into mental illness, and negative attitudes toward medication.Participants’ degree of autonomy, empowerment, and recovery were stable over a three-month period.

Identity and consent in dementia research

Author: Buller, T

Research in neuro-regenerative medicine (NRM) seeks to develop techniques for the repair and restoration of lost brain function, for example by the use of transplanted stem cells. If successful, the research would be a major breakthrough in our treatment of neurodegenerative conditions, such as Alzheimer’s disease, as well expanding our notions of neural plasticity and human nature.

In order to ethically justify the research two standard arguments can be employed: the research is in the subject’s best interest and/or in the best interests of others; and the subject has previously agreed to participate when competent. Both of these approaches seem problematic: First, it seems difficult to claim that the research is in the subject’s best interest, and the degree of risk and invasion mitigates against justification in terms of social benefit. Second, the subject’s prior consent (and proxy consent) is problematic since (a) the experimental nature of the research questions whether this consent or assent could be sufficiently informed; (b) existing data on the wishes of patients and proxies provides little guidance for invasive research; and (c) changes to the individual’s narrative or psychological identity question the “authenticity” of the consent. Furthermore, the restoration of brain function is not equivalent to the restoration of the narrative or psychological unity of a person’s life. An alternative approach that is less ethically problematic is to focus on individuals at the early stage of the disease who have mild dementia but are still able to make decisions about their own interests and welfare.

2:20-4:00 CONCURRENT SESSIONROOM ANDRÉ-BARBEAU

The clinical treatment of depression: Ethical disconnects at the mind-brain-dose interface

Authors: de Jong, V, Raz, A

Early studies of antidepressants demonstrated clinical efficacy at doses much lower than those currently recommended. Even when deemed sub-therapeutic by modern standards, lower doses are clinically effective – perhaps through a placebo effect. Clinical guidelines for the recommendation of dose levels often thrive on market forces and may reflect ulterior factors rather than clinical evidence. In addition, mounting data have cast

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4:00-5:00 PLENARY SPEAKER JUDY ILLES

5:00-5:15 CLOSING REMARKS

doubt on the clinical efficacy of antidepressants, compared with placebos, for the treatment of mild-to-moderate depression. In such cases a placebo can duplicate, on average, 80% of the response generated by antidepressant medication. However, neither the latest American Psychiatric Association Practice Guidelines for Depression nor the guidelines published by the Canadian Network for Mood and Anxiety Treatment mention the powerful influence of placebos. Is this intentional? Is this an oversight? Our talk highlights results from field interviews with Canadian psychiatrists, researchers and guideline authors, which address these conundrums. We argue that a fundamental lack of adhesion to the evidence exists in the face of a systematically upheld guise of certainty as to the neurochemical basis of depression, combined with the convenient availability of a treatment tool that appears to fix it. Through this argument, we can explore the hollows of evidence-based psychiatry: those that conflict with the standard of care, question our ethical grounds, and shake-up our long-held logic.

Ethical challenges beyond placebo induction in psychogenic non-epileptic seizures

Authors: Ross, L, Ford, PJ

The condition of psychogenic non-epileptic seizures (PNES) is a somatoform disorder that provides a unique opportunity to explore healthcare values and assumptions in medicine. Patients with PNES have chronic seizures with psychological/psychiatric causes and are often wrongly placed on epilepsy medication during the roughly 7-10 years that it takes for most patients to be diagnosed. The reliable diagnostic test for this disorder is a continuous Video EEG where a patient is monitored as an inpatient. In the United States 30-40% of Video EEG beds are occupied by PNES patients rather than Epilepsy patients, for which they were designed. Although ethical issues in PNES are most commonly associated with the ethics of purposely inducing seizures in a deceptive or risky manner, there is an important cadre of ethics issues that are poorly addressed. This presentation will provide a novel overview of the ethics issues in PNES and will provide an argument regarding the liminal nature of PNES patients because their illness falls between the traditional and new paradigms of brain sciences. Of note is that PNES patients are three times more likely to be female than male. Psychiatrists and neurologists send patients back and forth between them with each believing the seizures should be treated by the other specialty largely because the disorder does not fit their paradigms. Beyond these professional obligations, ethical questions include the proper role of informal caregivers, how to address refusals of patients who do not accept the diagnosis, and recommendations about driving.

The subconceptual role of intuition in clinical equipoise: Support from neuroscience

Author: Braude, H

Benjamin Freedman’s concept of clinical equipoise (CE) serves as a decision rule that balances the tension between therapy and practice in clinical research. However, the importance of CE in research ethics remains deeply contested. Opponents of CE have criticized it for ignoring the clinician’s therapeutic responsibility towards individual patients, epitomized by the fact that CE does not consider clinical intuitions or ‘rational hunches’ as valid scientific evidence; and for maintaining the therapeutic imperative in clinical research. I have argued elsewhere that Freedman’s concept of CE subtly navigates between these two critical positions. The internal mechanism of CE derives from its application of a moral epistemology of clinical reasoning about individuals to epidemiological reasoning at the population level. Freedman’s apparently ambiguous reference to the role of clinical intuitions provides the epistemological and moral basis on which the larger edifice of CE is built. Clinical intuition provides the subconceptual foundation of CE. This paper provides neuroscientific support for this novel claim about CE. In support of my argument I draw upon recent research into the neuroscience of intuition and the older theory of connectionism in cognitive science. In providing empirical support for the role of intuition in the epistemology of CE, this paper provides a singular application of neuroethics to resolve a deep epistemological problem about the most important and controversial concept in clinical research ethics. This paper is intended to make an important contribution towards neuroethics and translational research in medicine and psychiatry.

POSTER ABSTRACTSConstraints on making knowledge explicit: A philosophy for the translation of knowledge, from neuroscientific research to psychiatric practice

Author: Copeland, S

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7The translation of knowledge from research to care is particularly difficult in psychiatry because some kinds of knowledge gathered by researchers and used by practitioners is difficult to make explicit. Not all observations made by researchers or used by practitioners are easily quantifiable, for example, a key method for making knowledge explicit and thereby translatable from one field to another. This poster explores the various ways in which meaning can be lost during processes of knowledge translation in general, focussing on issues particularly relevant to psychiatric research and practice. Philosophy of science and science and technology studies both have theorized what criteria are necessary for making knowledge explicit in general; I apply this theory to the particular context of the translation of knowledge between neuroscience and psychiatry.

An investigation of public opinion on issues in cognitive enhancement

Authors: Nadler, R, Reiner, PB

While participants in the neuroethical debate over cognitive enhancement continue to stake out duelling philosophical positions, little effort has yet been made to assess which – if any – of the arguments offered will hold sway with people outside academia. To address this issue, we have begun to survey the general public, with the hypothesis that folk attitudes regarding pharmacological cognitive enhancement may not square neatly with any existing strain of expert opinion. Recognizing the threat of hypothetical bias and social desirability bias in posing questions on this topic, we employ methods involving contrastive vignettes in order to tease out respondent intuitions, looking at between-group differences in order to gauge not just what the folk think that they think, but what they really think. Preliminary data suggest that support for stark policy options (outright ban or total deregulation) appears limited, and pragmatic concerns (e.g. safety, accessibility) seem to edge out familiar arguments from philosophical angles such as cognitive liberty or compromised authenticity. On the other hand, a separate emerging trend in the data suggests that “pharmacological Calvinism” – the perception that self-improvement via chemical means is of intrinsic moral disvalue – may be playing a role in folk reasoning about some cases. The continuation of our efforts will shed further light on the nature and coherence of respondents’ moral reasoning about these issues, producing data of relevance to regulatory authorities considering how to respond to the near-term prospect of viable enhancement technologies.

A link in the ink: Mental illness and criminal responsibility in the media

Authors: Robillard, JM, Illes, J

Neuroscience innovations are rapidly advancing our understanding of psychiatric disorders and social behaviours and are playing an expanding role in the courtroom. Meanwhile, the media reports on neuroscience research and its applications in a communication style that adheres to a set of standards distinct from traditional scientific reporting. To understand the current state of media reporting of issues at the intersection of law and neuroscience and launch a discussion of the ethical issues surrounding neuroscience communication, we conducted a press content analysis of articles containing law terms and neuroscience terms. We analyzed three different types of publications (major US newspapers, magazines and legal news) over the past ten years. Analysis of the 496 articles retrieved shows a marked increase in neurobiological explanations for criminal behavior in the media. Concepts of mental illness and neurological damage are closely associated with criminal responsibility. The concept of mental illness tends to be particularly ill defined. The growing visibility of neurobiological explanations of responsibility that challenges notions of autonomy and free will may fundamentally change the way that the courts and the public think about criminal behavior, punishment and policy. In addition, the imprecise depiction of mental illness and the implicit connection between mental illness and criminal behavior may contribute to stigma against people living with mental illness. Our results provide a constructive starting point for advancing better communication and exchange about mental health and society, and lay the foundations for evidence-based outreach opportunities.

Including relatives as clients into the rehabilitation process after stroke: Related ethical issues as perceived by relatives and patients

Authors: Rochette, A, Racine, E, Lefebvre, H, Lacombe, J, Bastien, J

Objective: To document perceptions about ethical issues of relatives and individuals with a first stroke with respect to including the relative into the rehabilitation process as a client. Methods: Qualitative design with a phenomenological orientation. In-depth interviews including open-ended questions focused on perceptions of actual services received by relatives versus ideals services and involvement in decision making. Data were collected more than three weeks following discharge from acute care or from in-patient rehabilitation services. Audio content was transcribed verbatim and analysed rigorously by two team members. Results: Sample was composed of 25 relatives (mean age 53.4 ± 12.7 and women n=21/25) and of 16 individuals with a first stroke (mean age=55.7 ±11.2 and women n=7/16). Main themes emerging from

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preliminary analysis include respect – openness to communication where participants mentioned how busy they felt the medical staff to be and at the same time felt respect most of the time when they did ask questions or sought information; positive and negative attitudes from medical personnel; legitimacy to receive services as a relative where relatives (and individuals with stroke) mentioned relative’s needs for information, education and support but did not perceived themselves as clients which detrimentally impacted autonomy in decision making. Conclusion: Although it is now recommended by best practices to systematically offer services to relatives post-stroke and that relatives do identify needs in terms of information, education and support, both individuals with stroke and their relatives are not fully aware of relatives ‘rights’ to receive such services.

Ethical challenges in evidence-based pediatric neurology

Authors: Chouinard, I, Racine, E

Evidence-based medicine (EBM) is the “the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients”. It is a process by which clinicians incorporate the latest information from research to support clinical decision-making. A process developed originally for use in adult populations, the generation and application of evidence in pediatric populations is problematic for several reasons. For instance, it is well-known that, for ethical reasons, fewer children are part of clinical research, thus generating less “evidence” specific to children. This discussion paper provides an overview of the complexity of applying a model of medical practice (EBM) that requires the use of evidence in the care of children and critically examines the ethical challenges arising from the generation and application of evidence in pediatric neurological populations. Using the context of prognostication of neurological outcomes in life support decisions, this paper will highlight ethical challenges particular to evidence-based pediatric neurology, including (1) an examination of the types of evidence that are used in pediatric neurology and how it aligns within EBM, (2) an analysis of the ethical ramification of the use of evidence in pediatric neurology settings, and, in particular, in the process of neurological prognostication, and (3) review what is known about the effects that this might have on complex ethical decision-making such as withholding and withdrawal of care.

Neural correlates of thought

Authors: Ali, S, Raz, A

Neuroscientific research is gaining increasing prominence in society, as findings progressively influence other fields

such as law and medicine. In order to facilitate the accessibility of neuroscientific information, scientists skew complicated interpretations at the expense of crucial experimental and contextual detail. Therefore, not only are the capabilities of neuroscience unclear to many, but previous studies demonstrate that individuals place undue faith in neuroscientific terminology, which appears to hinder their critical thinking. Our recent study, for example, found that individuals placed in a sham brain-imaging paradigm, believed in the technology’s ability to read their minds. These results are indicative of the general public, but also include students of neuroscience who should be well versed in the technologies of their field. This evidence demonstrates a serious gap between neuroscience’s capabilities and society’s perception of what is possible. Moreover, this disconnect emphasizes a widespread neuroethical issue that requires a more comprehensive level of attention and communication from scientists and science reporters. Furthermore, we executed two comparable decision-making tasks in order to study the effect that the presence of neuroimaging technology has on an individual. Herein, we discuss the ethical repercussions of scientific results that depend on these technologies and argue that the way individuals react to a paradigm is affected by the unique significance often attributed to neuroscience.

Documentation of ethical process and review in neurosurgical research

Authors: McDonald, P, Kulkarni, A, Zeiler, F

Background: Research Ethics Boards (REBs) are a safeguard for the protection of participants in human subjects research. This study examined the frequency of documentation of REB review in human subjects research published in three major neurosurgical journals: The Journal of Neurosurgery (JNS), Neurosurgery (NS), and the British Journal of Neurosurgery (BJNS). 2 different epochs were studied: July 2002-June 2003, and July 2007-June 2008. Methods: All reports involving human subjects research published in JNS, NS and BJNS between July 2002-June 2003, and July 2007-June 2008 were reviewed for the presence of ethical process mentioned within. A total of 935 articles were reviewed -504 articles in 2002-2003 and 431 in 2007-2008. Results: Documentation of ethical process was found in 311/935 (33.3%) human subject investigations. Comparing between the year of July 2002-June 2003 and July 2007-June 2008, the mention of ethical process increased from 123/503 (24.4%) to 188/431 (43.6%) respectively. Evaluation of subcategories of articles during these two time periods demonstrated an increase in ethical process review from 85/168 (50.6%) to 121/185 (65.4%) in prospective studies, while review of retrospective studies increased from 38/336 (11.3%) to 67/246 (27.2%). Conclusions: Overall increases were

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7noted in the documentation of ethical process from July 2002 – June 2003 to July 2007 – June 2008. There was a significant increase in ethical process documentation in prospective studies. Proper ethical process in neurosurgical research can be ensured by editors requiring the adherence to national and international standards prior to publishing.

Neuroscience and the treatment of mentally ill criminal offenders; some ethical issues

Author: Gkotsi, GM

Neuroscience has recently come to play a part in criminal adjudications, influencing all stages of the criminal procedure, most importantly the sentencing. Finding a suitable sentence for mentally ill offenders has long been a problem for jurists and psychiatrists. Neuroscientific research promises to address this question using the neurobiology of mental illness with the purpose of imposing on the offender treatment instead of punishment. In this paper I propose to explore the ways in which neuroscience discoveries could influence the treatment/sentencing of mentally ill offenders, especially juvenile and drug addicts, but also to overview the potential dangers for them. The historical background of using neuroscience to treat mentally ill offenders is briefly surveyed and some concrete cases are examined. It is concluded that the use of neuroscience in treating mentally ill offenders can be a double edged sword, seriously challenging their autonomy and freedom, for a number of reasons; the question of how to distinguish “normal” from mentally ill people remains unsolved, since the “Mad or Bad” problem is moral, not just epistemic, and, to an important extent, a norm-setting, rather than a fact-finding issue. The tendency in viewing crime itself as a disease, embraced by legal scholars as well as neuroscientists conducting research on the neurobiology of violence, is also to be carefully evaluated, since violence and crime are socio-legal constructions which cannot be explained exclusively on the neurobiological level. Neuroimaging results could lead judges to impose long sentences, based on the assumption that some damaged brains are incapable of being treated.

Examining mental health trainees’ perspectives on the ethical and social issues in the treatment of psychiatric conditions with deep brain stimulation

Authors: Bell, E, Karpowicz, L, Racine, E

Background: Deep brain stimulation (DBS), an approved therapy for motor disorders including Parkinson’s disease, is currently researched in the field of psychiatry. As mental health care providers may encounter patients treated with

neurostimulation in a foreseeable future, it is of interest to explore their perspectives and attitudes regarding the ethical and social issues related to this emerging use of DBS. Methods: Trainees in four health care fields (nursing, psychology, occupational therapy, social work) having contact with mental health populations take part in a semi-structured interview. The interview is based on required readings from popular science periodicals on the use of DBS in psychiatry and is designed to identify and characterize the ethical and social issues related to this practice from the mental health trainee’s perspectives. Results: Various aspects of the ethics surrounding DBS in psychiatry are discussed. These include notably the trainees’ perspectives on: whether or not this therapy is a cure and whether patients may view it as such; the potential challenges created once patients return to the community with a stimulator; the impact DBS may have on personality. This study is valuable not only in exploring the ethical landscape of DBS in psychiatry but also in assessing whether health care providers in training will be ready to work with patients undergoing experimental or innovative treatments. Importantly, the way providers perceive a new treatment might have a major impact on its acceptance in the medical community, and hence on its medical and ethical success.

In defence of a humanistic neuroanatomy curriculum in medical school

Authors: Hazelton, L, Tekin, S

Knowledge of neuroanatomy is valuable in understanding and treatment of both neurological and psychiatric disorders (e.g., Huntington’s disease and schizophrenia). There has been increasing pressure in recent years, however, to justify the place of neuroanatomy in the undergraduate curriculum as medical schools move toward outcomes-based competency models. There are also concerns that medical students are often not able to apply their knowledge of neuroanatomy, learned in the preclinical curriculum, to clinical situations. In this paper, attempting to reposition neuroanatomy education, we propose a Humanistic Neuroanatomy Curriculum (HNC), a hybrid model of neuroanatomy curriculum drawing on both to the traditional approach which views neuroanatomy as foundational to understanding neurological and psychiatric disorders, and the phenomenological approach which primarily focuses on patients’ illness experience. In HNC, patients, suffering from neurological and psychiatric disorders, are conceived as persons– embodied, social and psychological beings.We defend HNC on two grounds. First, HNC will demystify neuroanatomy in the eyes of the medical students and will encourage them to apply this knowledge to clinical cases, because it integrates patients’ experience with the neurophysiological explanations of disorders.Second, HNC training will make clinicians more responsive

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was embodied, social and psychological beings. We believe that the most beneficial treatment is the one in which patients understand both the neurophysiological underpinnings of their condition, and their illness experience. Thus, through HNC training, clinicians will help patients to cope more effectively.

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