Social and Ethical Challenges of HBP

Abdul H. Mohammed Linnaeus University and Karolinska Institutet Växjö and Stockholm , Sweden

1st HBP School, Alpbach, Austria, September 8 – 14, 2014 SP12 Ethics and Society

Jean-Pierre Changeux (dir.) Kathinka Evers (dir) Institut Pasteur, France Uppsala University

Nikolas Rose Abdul Mhammed King’s College London, UK Linaneus University, Sweden

Bernd Carsten Stahl Yadin Dudai De Montfort University, Leicester, UK Weizmann Institute of Science, Israel

Lars Kluve Kevin Grimes Danish Board of Technology, Denmark Karolinska Institute, Sweden

Christine Mitchell Barbara Sahakian Harvard Medicla School, USA Cambridge University, UK

Richard Walker Benjamin Simmenauer EPFL, Switzerland Institut Pasteur, France

Ethics • ”In a civilized life law floats in a sea of ethics” • Earl Warren, (1891 – 1974) • You can turn away from ethical questions, but they will not go away • Ethical dilemma – morally problematic situation, where you have to pick between two or more acceptable but often opposing alternatives that are important to different groups. (”right-versus-right” decision) Neuroethics • Encompasses a wide array of ethical issues emerging from different branches of clinical neuroscience (neurology, psychiatry, psychopharmacology) and basic neuroscience (cognitive neuroscience, affective neuroscience). • These include ethical problems raised by advances in functional neuroimaging, brain implants and brain- machine interfaces and psychopharmacology as well as by our growing understanding of the neural bases of behavior personality, consciousness …http://neuroethics.upenn.edu/

The goals of the HBP ethics and society pillar: to explore the project’s social, ethical and philosophical implications, to promote engagement with decision-makers and the general public, to promote social and ethical awareness among project participants, and to ensure that the project is governed in a way that ensures full compliance with relevant legal and ethical norms. • The size and complexity of the HBP, and the complex and varied nature of the ethical issues raised. Laundry list of ethical issues • New techniques for the control of human behavior • New techniques for the manipulation of human memory • Creation of false memories • Memory deletion • New techniques for mind-reading

• Lie detection • Applications in criminal law • Applications in surveillance • New techniques to forecast human abilities (e.g. applications in education) • Assessment of criminal responsibility through brain scanning • New techniques to forecast human behavior (e.g. criminal behavior) • Intrusiveness, violation of individuality, privacy and human uniqueness. • Human enhancement • Application of knowledge/power in society & e.g. military & police, or by commercial interests, or criminal organisations. • Unforeseen side effects, e.g. new ways of manipulating human behavior • Traditional research ethics and governance (informed consent) • Philosophical & religious beliefs & human world- views • Appropriateness and exactness of human brain models and simulation. • Personhood and moral rights of a simulated brain • Justification of technical choices in the simulation of the brain. . KEY MISSIONS FOR ETHICS AND SOCIETY IN THE HBP • To explore the HBP’s social, ethical and philosophical implications, the benefits of research on the brain and its technological applications • To identify any potentially risky or troubling implications for early discussion • To serve as an interface between the HBP community and the public’s perceptions and questions • To foster HBP scientists’ engagement into ethical reasoning and ensure that the HBP follows a policy of responsible innovation • Maintain alertness for national and regional policy updates concerning ethical research. 1. Forecasting innovation and its social and economic impact. 2. Conceptual and philosophical issues. 3. The public, dialogue and engagement. 4. Researcher awareness. 5. Governance and regulation.

12.1 Foresight Lab

• Consulting systematically with researchers, potential users of new technologies, civil society groups, regulators and other stakeholders, the Foresight Lab develops a set of social and economic scenarios, which will serve as frameworks for evaluating the possible consequences of the HBP on different areas of society. • Nikolas Rose, King’s College London, UK 12.2 Conceptual and Philosophical Issues • This WP provides a conceptual analysis of human brain simulation in the HBP: its meaning, distinct theoretical approaches, underlying assumptions, and the implications for our understanding of the mind and consciousness. • It involves close collaboration with other subprojects, ensuring that philosophical analyses are well connected to the experimental data and hypotheses coming from HBP, and that they make a genuine contribution to their interpretation. Kathinka Evers, Uppsala University, Sweden 12.3 The public, dialog and engagement

This program creates a constructive dialogue with the general public and private stakeholders, maintaining an intense engagement with points of view external to the HBP, identifying emerging controversies, and formulating recommendations for HBP research and research priorities. Both established and innovative methods are used, like online deliberation, European citizens’ conventions and experts forum.

Jean-Pierre Changeux, Pasteur Institute, France 12.4 Researcher Awareness The WP encourages and fosters ethical and social reflection within the HBP consortium, particularly among young researchers, clinicians and technology developers. It explores the ethical and social perceptions of scientists in the HBP, beginning with a survey of the ethical and social views of HBP researchers and their perceptions of responsible research and innovation in their individual areas of expertise. The WP seeks to help HBP researchers to be alert to ethical and social issues, and to raise them in appropriate forums. Bernd Carsten Stahl, De Montfort University, Leicester, UK 12.5 Governance and Regulation

To support HBP decision-making on signicant ethical and social issues, and to ensure that the project fully complies with European and national legal and regulatory requirements, the ‘Governance and Regulation’ group has set up and assists two independant committes: Ethical, Legal and Social Aspects Committee (ELSA) and Research Ethics Committee (REC). Abdul Mohammed Linnaeus University, Växjö, Sweden HBP: WP 12.1: The Foresight Lab • The goal of this WP is to identify and evaluate the potential impact of the new knowledge and technologies produced by the HBP, in terms of benefits to European citizens, European industry, the European economy and European society • WP12.1 will conduct systematic foresight exercises to identify and evaluate these impacts. • The exercise, which will progress along several different timescales, up to a twenty-year horizon, will model pathways that will predict the emergence of medical, computing and other technologies based on HBP results and to locate and analyze the possible outcomes in the context of likely social and economic futures. WP12.3

• The goal of WP 12.3 is to help the HBP create a constructive dialogue with public and private stakeholders and with the general public, maintaining an intense engagement with points of view external to the HBP, identifying emerging controversies, and formulating recommendations for HBP research and research priorities. This WP will use a mix of established and innovative methods reflecting current best practice in dialogue, communication and outreach and adapting the choice of methods to specific audiences. This chosen strategy will reflect the importance of early, upstream engagement and embody the ethos of participatory technology assessment. • T12.3.2 European citizens’ Conventions • The goal of T12.3.2 will be to move beyond traditional debates among scientists, politicians and interested parties, to involve European citizens actively in HBP decision-making. Over the duration of the HBP, T12.3.2 will organise five Citizens Conventions dedicated to the HBP. The first of these will be held in Year 3, at the CP-CSA when the project’s platforms are fully operational and the project is beginning to yield its first scientific results. This task will be partly performed by a partner selected by the HBP Competitive Calls Programme. Researcher Awareness

WP 12.4 is meant to facilitate the reflection on ethical and social issues within the HBP. The main mechanisms of achieving this are: in-depth interviews, surveys, collaborative activities such as workshops. Research Objectives • Identification of ethical and social issues – By interviewing SP management – By drawing on Society and Ethics Programme compilation of issues (laundry list) – Where required, supplementary interviews with management • Survey of HBP researchers • In-depth investigation of issues using focus groups and interviews • Reflective workshops • Establish links to teaching, training & education ELSA and REC The first goal of the Ethics and Society Programme is to set up and begin to operate the organizational structures that will provide ethical governance within the project. These will include an Ethical, Legal and Social Aspects Committee (ELSA) and a Research Ethics Committee (REC).

23 ELSA Strategic oversight over ethical, legal and social issues arising from HBP research will be provided by an independent Ethical, Legal and Social Aspects Committee (ELSA), which will advise the GA, the GB and the ExCo, acting on its own initiative or in response to specific requests. Where useful or requested, the committee may also formulate recommendations for national and European regulators and raise issues it believes should be 24 the object of broad public debate. REC A separate Research Ethics Committee (REC), independent of the ELSA, will help the partners to ensure that HBP research meets the highest possible ethical standards and that it complies with all relevant European, national and regional law, as well as with the deontological standards imposed by relevant professional bodies. The committee will include members with competency in competencies in law, medicine, medical research, animal experimentation, and privacy/data protection.

25 REC: Research Ethics

independent of the ELSA

Mission: to help the Partners to ensure that HBP research meets the highest possible ethical standards and that it complies with all relevant European, naonal and regional law, as well as with the deontological standards imposed by relevant professional bodies.

Co-funded by the REC: Strategies

REC strategies include: ü Preparing and revising guidelines ü Responding to researcher queries ü Reviewing HBP local research ethics applicaons to local Independent Review Boards ü Meeng quarterly

REC is supported by a permanent staff from the HBP Ethics and Society Division: • Organises meengs • Tracks changes in naonal and European regulaons • Provides regular informaon on these changes to commiee members and to HBP research groups • Maintains a website and a secure database containing details of past and on-going ethics applicaons (successful and unsuccessful) and communicaons with IRBs (Parts of this database will be made available to the public)

Co-funded by the ELSA: Strategic oversight

Independent, advisory capacity to: – General Assembly – Board of Directors – ExCo Acts on its own iniative or in response to specific requests; Formulates recommendaons for naonal and European regulators; Raises issues it believes should be more broadly and publically debated

Co-funded by the ELSA: Membership

• Inial term of office: 5-years Minimum complement: 12

Where the Commiee believes that the current membership is unbalanced or insufficiently representave, or that it lacks key competencies, it will have the power to “co-opt” addional members.

Co-funded by the ELSA: Meetings and Working Groups

The Commiee meets in plenary sessions twice per year (i.e. M6, M12 …) – Sets dates – Elects Chair (Vice-Chair) – Lists its own agenda – Keeps minutes – (During the plenary meengs: ) Idenfies issues; appoints Working Groups to examine them in depth

Working Groups: – formulate dra recommendaons, which the commiee will formally adopt, or reject – Where useful for its work, ELSA will organise hearings, as a forum at which HBP managers and sciensts and invited experts from outside The Consorum will present and answer quesons about specific areas of HBP strategy, research and technology development.

Co-funded by the ETHICS, LEGAL AND SOCIAL ASPECTS COMMITTEE (ELSA) Ignacio Torres-Alemán –Spanish Biologist and Neuroendocrinologist – PhD Nikola Biller-Andorno – Swiss Bioethicist – MD PhD Berit Bringedal – Norwegian Sociologist - Senior Researcher at Institute for Studies of the Medical Profession Markus Christen - Swiss Neuroethicist – PhD Hironori Matsuzaki –Japanese. Social Theory, Philosophical Anthropology, Sociology of Scientific Knowledge, Ethical, Legal and Societal Issues concerning Robotics

Co-funded by the

ETHICS, LEGAL AND SOCIAL ASPECTS COMMITTEE (ELSA) – (continued) Fiorella Operto –Italian Roboethicist –Philosopher, founder and chair of the School of Robotics Society; Roboethics (Ethical) Joëlle Proust - French Philosopher - PhD; Ecole Normale Supérieure, Paris Stefano Rodotà – Italian Expert on Law, Human Rights, and Privacy and Data Protection; former member of the Italian and European Parliament Alberto Rábano Gutiérrez - Spanish MD, PhD, neuropathologist and neuroscientist, Steering Committee of Biobanks

Co-funded by the

ETHICS, LEGAL AND SOCIAL ASPECTS COMMITTEE (ELSA) – (continued) Julian Savulescu – British Neuroethicist –Director, Oxford Centre for Neuroethics Jean-Dominique Vassalli - Swiss MD PhD, Rector of the University of Geneva Luc E. Weber – Swiss Economist -professor of Public Economics University of Geneva; Chairman of the Swiss Rectors' Conference Christiane Woopen – German MD Philosopher/Ethicist – Gynecology and Obstetrics; Chair, German National Ethics Council Kevin Grimes ex officio & Christine Mitchell ex officio

Co-funded by the

RESEARCH ETHICS COMMITTEE

Karin Blumer – Swiss PhD Veterinarian and Philosopher – Novartis SA Margaret Buckingham - French-British PhD Developmental Biologist – Institut Pasteur; French Academy of Sciences Jürg Kesselring – Swiss MD Neurologist and Neuroscientist – Head Neurology at the Rehabilitation Centre in Valens, Member International Red Cross Miguel Medina – Spanish PhD Biochemist and Molecular Biologist, Noscira S.A Melita Salkovic-Petrisic – Croatian MD, MS and PhD Professor of Pharmacology Zagreb Member Ethics Committee/Laboratory Animal Procedures Henrik Walter – German MD PhD psychiatrist, neurologist, philosopher and cognitive neuroscientist Abdul Mohammed ex officio & Barbara Sahakian ex officio

Co-funded by the SP12.5 Ethics Governance and Regulation Secretariat

Shamim Patel, Linnaeus University Abdul Mohammed, Linnaeus University and Karolinska Institutet Christine Mitchell, Harvard Medical School Barbara Sahakian, Cambridge University Kevin Grimes, Karolinska Institutet

Co-funded by the Issues arising from HBP research: Animals used in experimentation • Primarily rodents but others also • E.g. multi-level organization of the mouse brain; and brain function and cognitive architectures in other species (not in the ramp-up phase) • No experimentation will go beyond normal practice in the partner organizations which are responsible for the work • All comply with relevant regulations and must be approved by ethical review boards. Issues arising from HBP research: Animals used in experimentation E.g. ways to mitigate: Ø Data sharing and information systems that enable identification of data already available, thus reducing duplication in animal experimentation.

• Tasks in SP1 are working towards minimising and refining the use of animal involvement

Vice-President Viviane Reding, the EU's Justice Commissioner • "Data protection in the European Union is a fundamental right. Europe already has the highest level of data protection in the world. • With the EU data protection reform which was proposed exactly two years ago – in January 2012 – Europe has the chance to make these rules a global gold standard. These rules will benefit citizens who want to be able to trust online services, and the small and medium sized businesses looking at a single market of more than 500 million consumers as an untapped opportunity. The European Parliament has led the way by voting overwhelmingly in favour of these rules. I wish to see full speed on data protection in 2014."