Ethical Aspects of ICT Implants in the Human Body Rafael Capurro European Group on Ethics in Science and New Technologies (EGE) Hochschule der Medien (HdM) - University of Applied Sciences, Stuttgart, Germany

Rafael Capurro: Ethical Aspects of ICT Implants2 Overview I. European Group on Ethics (EGE) II. EGE Opinion No 20: Ethical Aspects of ICT Implants in the Human Body III. Ethics and Public Policy

Rafael Capurro: Ethical Aspects of ICT Implants3 I. European Group on Ethics (EGE) The European Group on Ethics in Science and New Technologies (EGE) is an independent, pluralist and multitisciplinary body which advises the European Commission on ethical aspects of science and new technologies in connection with the preparation and implementation of Community legislation or policies.

Rafael Capurro: Ethical Aspects of ICT Implants4 EGE Members 1.Prof. Göran HERMERÉN (Sweden), President, Philosopher, Professor of Medical Ethics, Faculty of Medicine, Lund University. 2.Prof. Linda NIELSEN (Denmark), Vice-President, Professor of Law, Rector of the University of Copenhagen. Prof. Nicos C. ALIVIZATOS (Greece), Professor of Constitutional Law, University of Athens. Prof. Rafael CAPURRO (Germany), Professor of Information Management and Information Ethics at University of Applied Sciences. Prof. Inez DE BEAUFORT (The Netherlands), Professor of Health Care Ethics at the Medical Faculty of the Erasmus University, Rotterdam. Prof. Yvon ENGLERT (Belgium), Head of Fertility Clinic, Free University of Brussels (ULB), Professor of Medical Ethics and Deontology, ULB. Prof. Catherine LABRUSSE-RIOU (France), Centre de recherche en droit privé, Université de Paris. Dr. Anne McLAREN (United Kingdom), Geneticist, Research Associate at Wellcome CRC Institute, Cambridge. Prof. Pere PUIGDOMÈNECH ROSELL (Spain), Research Professor at the Department for Molecular Genetics, Director of Institut de Biologia Molecular de Barcelona, CSIC Prof. Stefano RODOTA (Italy), Professor of Civil Law, University of Rome, Chairman of the Italian Data Protection Authority, Chairman of the European Group of the Data Protection Authorities. Prof. Günter VIRT (Austria), Professor of Theology, Institute of Catholic Moral Theology, University of Vienna. Prof. Peter WHITTAKER (Ireland), Biologist, Professor of Biology, Institute of Environment, Philosophy and Public Policy, University of Lancaster, Furness College.

Rafael Capurro: Ethical Aspects of ICT Implants5

6 EGE Secretariat Dr. Michael D. Rogers, European Commission, BERL 10/345, rue de la Loi 200, B-1049 Brussels, Belgium. EGE-Website: europa.eu.int/comm/european_group_ethi cs/index_en.htm europa.eu.int/comm/european_group_ethi cs/index_en.htm EGE-Newsletter "Ethically Speaking": providing also information on the activities of the National Ethics Committees.

Rafael Capurro: Ethical Aspects of ICT Implants7 EGE Opinions Opinion n. 16 (2002) Ethical aspects of patenting inventions involving human stem cells Opinion n. 17 (2003) Ethical aspects of clinical research in developing countries Opinion n. 18 (2003) Ethical aspects of genetic testing in the workplace Opinion n. 19 (2004) Ethical aspects of cord blood stem cells banks Opinion n. 20 (2005) Ethical Aspects of ICT implants in the human body

Rafael Capurro: Ethical Aspects of ICT Implants8 II. EGE Opinion No 20 EGE Opinion No 20: „Ethical Aspects of ICT Implants in the Human Body“ Delivered by the EGE to the European Commission on 16 March Online Version: avis3_en.htm -Printed Version (in English, French, and German) includes „ICT Implants in the Human Body“ A Review by Dr. Fabienne Nsanze.

Rafael Capurro: Ethical Aspects of ICT Implants9 EGE Opinion: Objective „(…) to raise awareness on questions concerning the ethical dilemmas created by a range of ICT implants in this rapidly expanding field.“

Rafael Capurro: Ethical Aspects of ICT Implants10 EGE Opinion: Scientific and Technical Background Current Applications and Research:  ICT implants on the market: Active medical devices: Cardiovascular pacers, cochlear implants, auditory brainstem implant (ABI), implantable programmable drug delivery pumps, implantable neurostimulation devices, deep brain stimulation (Parkinson) Identification and location devices: Microchip devices come in three forms: Read-Only, Read-Write, Devices with tracking capabilities (RFID, VeriChip™)

Rafael Capurro: Ethical Aspects of ICT Implants11 EGE Opinion: Scientific and Technical Background  Research on ICT Implants Medical devices: biosensors, artificial hippocampus, cortical implant for the blind, ocular implant/artificial retina, brain-computer interfaces (BCI) Surveillance or tracking devices: wearable ICT devices, subdermal GPS personal location devices (Applied Digital Solutions/ADS) Enhancement or commodity devices: prosthetic cortical implant, artificial vision, audio tooth implant, artificial hippocampus

Rafael Capurro: Ethical Aspects of ICT Implants12 EGE Opinion: Legal Background General principles:  Charter of Fundamental Rights of the EU  Data Protection Directives (95/46, 2002/58)  Convention on Human Rights and Biomedicine of the Council of Europe (1997)  UNESCO‘s Universal Declaration on the Human Genome and Human Rights (1997)  Declaration of Principles of the World Summit on the Human Society (2003)

Rafael Capurro: Ethical Aspects of ICT Implants13 EGE Opinion: Legal Background Human Dignity: Human Inviolability Privacy and Data Protection The Precautionary Principle Data Minimisation, Purpose Specification, Proportionality Principle and Relevance Autonomy and Limits on ICT Implants

Rafael Capurro: Ethical Aspects of ICT Implants14 EGE Opinion: Ethical Background „Contemporary society is confronted with changes that have to do with the anthropological essence of individuals. There is a stepwise shift in progress – after being observed, via video surveillance and biometrics, individuals are being modified, via various electronic devices, under skin chips and smart tags, to such an extent that they are increasingly turned into networked individuals. (…) This would be bound to modify the meaning and contents of an individual‘s autonomy and to affect their dignity.“

Rafael Capurro: Ethical Aspects of ICT Implants15 EGE Opinion: Ethical Background Fundamental Ethical Principles:  Human Dignity  Non-instrumentalisation  Privacy  Non-discrimination  Informed Consent  Equity  The Precautonionary Principle

Rafael Capurro: Ethical Aspects of ICT Implants16 EGE Opinion: Ethical Background „Value Conflicts: There could be coflict between the personal freedom to use one‘s economic resources to get an implant that will enhance one‘s physical and mental capabilities and what society at large considers as desirable or ethically acceptable.“

Rafael Capurro: Ethical Aspects of ICT Implants17 EGE Opinion: Ethical Background „Another value conflict concerns the potential conflict between limiting the freedom of people dangerous to others by surveillance and promoting the safety of others. Freedom of researchers may conflict with the obligation to safeguard the health of research subjects.“

Rafael Capurro: Ethical Aspects of ICT Implants18 EGE Opinion: Ethical Background „Concern for economic competitiveness and other economic values (economic growth) may come into conflict with respect for human dignity. The unrestricted freedom of some may endanger the health and safety of others. Therefore a balance has to be struck between values that are all legitimate in our culture.“

Rafael Capurro: Ethical Aspects of ICT Implants19 EGE Opinion: Ethical Background Some Important Knowledge Gaps Regarding ICT Implants in the Human Body  „How far can such implants be a threat to human autonomy particularly when they are implanted in our brains?“  „How far can ICT implants become a threat to privacy?“  „What lies behing the idea of an „enhanced“ human being?“  „How do we relate to persons with ICT implants that are connected online?“  „How far can we predict today the befenits and threats of such ICT implants?“

Rafael Capurro: Ethical Aspects of ICT Implants20 EGE Opinion: Scope „This Opinion focuses on the question of ICT implants in the human body. It does not deal with the whole field of ICT devices or with „wearable“ computing in general, although there may be cases in which such devices could be considered as quasi-implants.“

Rafael Capurro: Ethical Aspects of ICT Implants21 EGE Opinion: Scope „We shall not lay hand upon thee“: This was the promise in the Magna Carta – to respect the body in ist entirety: Habeas Corpus. This promise has survived technological developments Each intervention on the body, each processing operation concerning individual data is to be regarded as related to the body as a whole, to an individual that has to be respected in ist physical and mental integrity.“

Rafael Capurro: Ethical Aspects of ICT Implants22 EGE Opinion: Scope „This is a new all-round concept of individual, and its translation into the real world entails the right to full respect for a body that is nowadays both physical and electronic. In this new world, data protection fulfils the task of ensuring the „habeas data“ required by the changed circumstances – and thereby becomes an inalienable component of civilisation, as hs been the history for habeas corpus.“

Rafael Capurro: Ethical Aspects of ICT Implants23 EGE Opinion: Scope „At the same time, this is a permanently unfinished body. It can be manipulated to restore functions that either were lost or were never known – only think of maiming, blindness, deafness; or, it can be stretched beyond ist anthropological normality by enhancing its functions and/or adding new functions – again, for the sake of the person‘s welfare and/or social competitiveness, as in the case of enhanced sports skills or intelligence prostheses.“

Rafael Capurro: Ethical Aspects of ICT Implants24 EGE Opinion: ICT implants and human dignity „The Group considers that ICT implants are not per se a danger to human freedom or dignity but in the case of applications, which entail for instance the possibility of individual and/or gorup surveillance, the potential restriction of freedom must be carefully evaluated.“

Rafael Capurro: Ethical Aspects of ICT Implants25 EGE Opinion: ICT implants for health purposes „It goes without saying that informed consent is required, when ICT implants are to be used for health purposes. This information should not only concern possible benefits and health risks, but also risks that such implants could be used to locate people and/or obtain access to information stored in these devices without the permission of the person in whom the devices are implanted.“

Rafael Capurro: Ethical Aspects of ICT Implants26 EGE Opinion: ICT implants for health purposes „The Individual and the Network: To the extent that an individual via an ICT implant has become part of an ICT network, the operation of this whole network – not just the ICT implant – needs to be considered.“

Rafael Capurro: Ethical Aspects of ICT Implants27 EGE Opinion: ICT implants for health purposes „Freedom of Research: (…) The freedom of research in this field should be suject not only to the informed consent of the persons willing to participate in new experiments aiming at health recovery but also to the awareness of the possibility of damaging not only bodily but also psychic functions of the people participating in clinical trials.“

Rafael Capurro: Ethical Aspects of ICT Implants28 EGE Opinion: ICT implants for health purposes „Irreversible ICT Implants: The requirements of informed consent and data protection (privacy and confidentiality of the data in particular) need to be strictly enforced in cases where the ICT implants are irreversible and cannot be removed from the body without risk of severe damage or the individual‘s life.“

Rafael Capurro: Ethical Aspects of ICT Implants29 EGE Opinion: ICT implants for non- medical purposes „Mental Functions and Personal Identity: Personal identity is crucial for the attribution of moral responsibility according to many ethical theories. ICT devices should therefore not be used to manipulate mental functions or change personal identity.“

Rafael Capurro: Ethical Aspects of ICT Implants30 EGE Opinion: ICT implants for non- medical purposes „ICT Implants and Enhancement of Physical and Mental Capabilities: Efforts should be made to make sure that ICT implants are not used to create a two class society or to increase the gap between the industrialized countries and the rest of the world.“

Rafael Capurro: Ethical Aspects of ICT Implants31 EGE Opinion: ICT implants for non- medical purposes „ICT Implants for Surveillance Purposes: ICT implants for surveillance in particular threaten human dignity. They could be used by state authorities, individuals and groups to increase their power over others. The implants could be used to locate people (and also to retrieve other kinds of information about them). This might be justified for security reasons (early release for prisoners) or for safety reasons (location of vulnerable children.

Rafael Capurro: Ethical Aspects of ICT Implants32 EGE Opinion: ICT implants for non- medical purposes „However, the EGE insists that surch surveillance applications of ICT implants may only be permitted if the legislator considers that there is an urgent and justified necessity in a democratic society (Article 8 of the Human Rights Convention) and there are no less intrusive methods.

Rafael Capurro: Ethical Aspects of ICT Implants33 EGE Opinion: ICT implants for non- medical purposes „Nevertheless the EGE does not favor such uses and considers that surveillance applications under all circumstances, must be specified by legislation. Surveillance procedures in individual cases should be approved and monitored by an independent court. The same general principles should apply to the use of ICT implants for military purposes.“

Rafael Capurro: Ethical Aspects of ICT Implants34 EGE Opinion: General Considerations „The EGE considers that the ethical questions related to ICT implants in the human body are intimately related to the development of the Information Society as a whole. The EGE strongly supports the vision of a people-centred, inclusive and development-oriented Information Society as proclaimed in the Declaration of Principles of the World Summit on the Information Society (Geneva 2003).“

Rafael Capurro: Ethical Aspects of ICT Implants35 EGE Opinion: General Considerations „A broad social and political debate is needed as to what kind of applications should be accepted and legally approved, particularly concerning surveillance and enhancement. A precautionary approach is recommended by the EGE. The Member States and their national ethics councils (or correponding institutions) have a responsibility to create conditions for education and constructive, well-informed debates in this area.“

Rafael Capurro: Ethical Aspects of ICT Implants36 III. Ethics and Public Policy Ethics councils within the sphere of public policy have the function of reflecting on the moral and legal foundations of specific controversial issues without being itself neither a legal nor a moral authority. Their task is reflection, not decision- making or dogmatic proclamation.

Rafael Capurro: Ethical Aspects of ICT Implants37 Ethics and Public Policy They should counterbalance ethical arguments and give an opinion on matters that remain controversial and subject to revision. Today’s public policy has a need for such counsels particularly with regard to new developments in science and technology.

Rafael Capurro: Ethical Aspects of ICT Implants38 Ethics and Public Policy Of course, such ethics bodies are not unproblematic not only concerning their legitimating body – in some cases it is the parliament, in other cases the executive –, but also with regard to possible controversial standpoints that may differ with present laws and/or directives.

Rafael Capurro: Ethical Aspects of ICT Implants39 Ethics and Public Policy In other words, it is important that such bodies are politically independent, pluralist, and multidisciplinary and that they view themselves not just as guarantee of an established morality or of current law, but as a critical space where an open debate on legally and morally controversial issues can take place.

Rafael Capurro: Ethical Aspects of ICT Implants40 Ethics and Public Policy Although they might look for consensual opinions, consensus should not be a conditio sine qua non of their proposals. It is also not their function to make public policy ‘more moral,’ but to encourage ethical reflection within the public sphere.

Rafael Capurro: Ethical Aspects of ICT Implants41 Ethics and Public Policy Most European and non-European national and international ethics committees have been created in the nineties. UNESCO’s International Bioethics Committee (IBC) was created in The Steering Committee on Bioethics of the Council of Europe dates from US President George W. Bush created The President’s Council on Bioethics on the basis of the Executive Order from November 28, 2001 ( Most national and international ethics committees are in fact (until now) committees on bioethics. The EGE is the first international committee with a broader scope. See: Capurro, Rafael: Ethics Between Law and Public Policy. In: Journal of International Biotechnology Laws (JIBL) Vol. 1, Issue 2 / 2004, Online: