Ethical Aspects of ICT Implants in the Human Body Rafael Capurro Distinguished Researcher in Information Ethics, School of Information Studies, University of Wisconsin-Milwaukee, USA IEEE Symposium on Technology and Society (ISTAS10) University of Wollongong, New South Wales, Australia June 7-9, 2010

Overview Introduction EGE Opinion No 20 Scientific and technical background Legal Aspects Ethical Aspects Prospects Rafael Capurro, ISTAS 2010

Introduction The European Group on Ethics in Science and New Technologies to the European Commission Rafael Capurro, ISTAS 2010

Introduction „The Group is a neutral, independent, pluralist and multidisciplinary body, composed of fifteen experts appointed by the Commission for their expertise and personal qualities.“ Rafael Capurro, ISTAS 2010

Introduction „The task of the Group is to examine ethical questions arising from science and new technologies and on this basis to issue Opinions to the European Commission in connection with the preparation and implementation of Community legislation or policies.“ Rafael Capurro, ISTAS 2010

Introduction „In order to face the ethical issues that are arising with the rapid advances in science and technology, the Members represent a broader range of professional competences in different disciples such as, inter alia, biology and genetics, medicine, pharmacology, agricultural sciences, ICT, law, ethics, philosophy, and theology.“ Rafael Capurro, ISTAS 2010

Introduction „For every full Opinion to be issued by the Group, a roundtable is held before the Opinion is adopted, to which representatives of the Institutions of the European Union, experts of the fields, parties representing different interests, including NGOs, patients and consumer organisations and industrial stakeholders, are invited to participate in the debate.“ Rafael Capurro, ISTAS 2010

Rafael Capurro, ISTAS 2010

Opinion No 20 Ethical aspects of ICT implants in the human body (16 March 2005). Opinion produced on the direct initiative of the EGE Rapporteurs: Prof. Stefano Rodotà and Prof. Rafael Capurro http://ec.europa.eu/european_group_ethics/avis/index_en.htm Important Notice: This PP presents pictures, videos and links that are NOT part of the EGE Opinion. Please, do not quote the text of the Opinion from this PP but do it directly from the official text. Rafael Capurro, ISTAS 2010

Introduction „At first sight ICT implants are ethically unproblematic if we think for instance about cardiac pacemakers. However, although ICT implants may be used to repair deficient bodily capabilities they can also me misused, particularly if these devices are accessible via digital networks.“ Rafael Capurro, ISTAS 2010

Introduction „The idea of letting ICT devices get under our skin in order not just to repair but even to enhance human capabilities gives rise to science fiction visions with threat and/or benefit characteristics.“ Rafael Capurro, ISTAS 2010

Introduction „The intimate relation between bodily and psychic functions is basic to our personal identity.“ Rafael Capurro, ISTAS 2010

Introduction „Consequently the objective of this Opinion is primarily to raise awareness and questions concerning the ethical dilemmas created by a range of implants in this rapidly expanding field.“ Rafael Capurro, ISTAS 2010

Scientific and Technical Background Current Applications and Research Applications: ICT Implants on the market Active medical devices: Rafael Capurro, ISTAS 2010

Scientific and Technical Background Cardiovascular pacers for patients with conduction disorders or heart failure Cochlear and brainstem implants for patients with hearing disorders Implantable programmable drug delivery pumps for patients with Multiple Sclerosis or Diabetes Implantable Neurostimulation Devices Spinal cord stimulation for chronic pain management Sacral nerve stimulation for control of urinary incontinence Vagus nerve stimulation (VNS) for seizure control in epilepsy and mood control in severe depression cases Deap brain stimulation (DBS) for patients with Parkinson’s disease, for essential tremor Artificial chip-controlled leg Rafael Capurro, ISTAS 2010

Scientific and Technical Background Identification and location devices: Read-Only: for example allowing to identify Alzheimer‘s patients or children Read-Write: carrying a set of information (such as a person‘s medical history) Devices with tracking capabilities: a device that can emit a radio signal which could be tracked (RFID, VeriChip) Rafael Capurro, ISTAS 2010

Scientific and Technical Background Research on ICT Implants: Medical Devices Biosensors Artificial Hippocampus Cortical implant for the blind Ocular implant or artificial retina Brain-computer interfaces (BCI) Rafael Capurro, ISTAS 2010

Scientific and Technical Background Surveillance or tracking devices Wearable ICT Subdermal GPS Enhancement or commodity devices Prosthetic cortical implant (intelligence or sensory „amplifiers“) Artificial vision Audio tooth implant Artificial hippocampus (to enhance memory) Rafael Capurro, ISTAS 2010

Scientific and Technical Background Other potential uses Microsoft patent Number 6,754,472 June 22, 2004 concerns the human body as a medium for transmission of data (or energy) to „other devices“ like PDAs, cellular phones, medical devices, RFID, making possible to localize persons. The patent does not describe any specific device. Rafael Capurro, ISTAS 2010

Scientific and Technical Background „Smart guns“: weapons that can be fired only if operated by their owner with a RFID-chip implanted in his or her hand. Rafael Capurro, ISTAS 2010

Categorisation of ICT Implants Implantable devices can be categorised as: medical non-medical Both as: passive active Reversible or non reversible Stand-alone or online ICT implants and tags Rafael Capurro, ISTAS 2010

Future personal tracking devices Integration and miniaturization of three technologies: www.digitalangel.com Biosensor: read a person‘s vital signs by touching the skin (implanted into a wristwatch) Pager device: takes the data from the biosensor by using a cellular packet module Position location technology: using radio signal to stay in contact with a person‘s pager device -> this information is sent through cellular data packets to a data centre (Digital Angel™) -> The first Digital Angel was launched in November 2001 -> Medical emergency purposes -> Identification/Location purposes Rafael Capurro, ISTAS 2010

Legal Background General Principles: Universal Declaration of Human Rights EU Charter of Fundamental Rights of 2000 Convention on Human Rigts and Biomedicine of the Council of Europe EU Directives European Constitution National Constitutions Rafael Capurro, ISTAS 2010

Legal Background Human Dignity: providing that the human body and its parts shall not give rise to financial gain Human Inviolability Privacy and Data Protection The Precautionary Principle Data Minimisation, Purpose Specification, Proportionality Principle and Relevance Autonomy and Limits of ICT Implants Rafael Capurro, ISTAS 2010

Legal Background „ICT implants may: allow individuals to be located on a permanent and/or occasional basis; Allow the information contained in electronic devices to be changed remotely without the date subject‘s knowledge.“ Rafael Capurro, ISTAS 2010

Legal Background „These risks are bound to increase with the adoption of unified technical standards, which may allow data to be read and modified also by entities other than the data subject and the bodies/organizations lawfully managing the relevant plant or connection.“ Rafael Capurro, ISTAS 2010

Legal Background „Both circumstances are clearly in conflict with data protection rules concerning collection and processing of the information.“ Rafael Capurro, ISTAS 2010

Legal Background „For the legal background, it should be noted that: the existence of a recognised serious but uncertain risk, currently applying ot the simplest types of ICT implant in the human body (…) The purpose specification principle mandates at least a distinction between medical and non-medical applications (…) Rafael Capurro, ISTAS 2010

Legal Background „the data minimisation principle rules out the lawfulness of ICT implants that are only aimed at identifying patients, if they can be replaced by less invasive andequally secure tools; the proportionality principle rules out the lawfulness of implants such as those that are used, for instance, exclusively to facilitate entrance to public premises; Rafael Capurro, ISTAS 2010

Legal Background „the principle of integrity and inviolability of the body rules out that the data subject‘s consent is sufficient to allow all kinds of implant to be deployed; and the dignity principle prohibits transformation of the body into an objet that can be manipulated and controlled remotely – into a mere source of information.“ Rafael Capurro, ISTAS 2010

Ethical Background „Contemporary society is confronted with changes that have to do with the anthropological essence of individuals.“ Rafael Capurro, ISTAS 2010

Ethical Background „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.“ Rafael Capurro, ISTAS 2010

Ethical Background „Thus we might be continuously connected and could be configured differently so that from time to time we would transmit and receive signals allowing movements, habits and contacts to be traced and defined. This would be bound to modify the meaning and contents of an individual‘s autonomy and to affect their dignity.“ Rafael Capurro, ISTAS 2010

Ethical Background Fundamental ethical principles: Human Dignity Non-instrumentalisation Privacy Non-discrimination Informed Consent Equity The precautionary principle Rafael Capurro, ISTAS 2010

Ethical Background Value conflicts „There could be conflict between the personal freedom to use one‘s economic resources to get an implant that will enhance one‘s physical capabilities and what society at large considers desirable or ethically acceptable.“ Rafael Capurro, ISTAS 2010

Ethical Background „Another value conflict concerns the potential conflict between limiting freedom of people dangerous to others by surveillance and promoting the safety of others.“ Rafael Capurro, ISTAS 2010

Ethical Background „Freedom of researchers may conflict with the obligation to safeguard the health of research subjects.“ Rafael Capurro, ISTAS 2010

Ethical Background „Concern for economic competitiveness and other economic values (economic growth) may come into conflict with respect for human dignity.“ Rafael Capurro, ISTAS 2010

Ethical Background „Some Important Knowledge Gaps Regarding ICT Implants in the Human Body: Rafael Capurro, ISTAS 2010

Ethical Background „Human Dignity, Integrity and Autonomy: How far can such implants be a threat to human autonomy particularly when they are implanted in our brains? How far can they have irreversible impacts in the human body and in the human psyche? How will they influence human memory? Does a human being cease to be such a „being“ in cases where some parts of his or her body – particularly the brain – are substituted and/or supplemented by ICT implants?“ Rafael Capurro, ISTAS 2010

Ethical Background „Privacy and Surveillance: How far con ICT implants become a threat to privacy? How far can ICT implants give an individual, or a group, specific capabilities that could become a threat to society?“ Rafael Capurro, ISTAS 2010

Ethical Background „Enhancement and Self Awareness What does perfectibility of human beings mean? How far should the use of such implants to enhance human capabilities be allowed?“ Rafael Capurro, ISTAS 2010

Ethical Background „Social Aspects How do we relate to persons with ICT implants that are connected online? How far should ICT implants remain invisible to an external observer? How far can they be used to track human beings and in which cases should this be legally allowed?“ Rafael Capurro, ISTAS 2010

Ethical Background „ICT Implants for which special caution is necessary: ICT implants that cannot be removed easily ICT implants that influence, determine of change psychic functions ICT implants that could be misused for social surveillance and manipulation Military applications“ Rafael Capurro, ISTAS 2010

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, ISTAS 2010

Opinion „We shall not lay hand upon thee“. This was the promise made in the Magna Carta – to respect the body in its entirety: Habeas Corpus.“ „In this new world, data protection fulfils the task of ensuring the „habeas data“ required by the changed circumstances“. Rafael Capurro, ISTAS 2010

Opinion „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 (…) 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, ISTAS 2010

Opinion „ICT Implants for health purposes: The objective is important The implant is necessary to achieve this objective, and There is no other less invasive and more cost-effective method of achieving this objective.“ Rafael Capurro, ISTAS 2010

Opinion „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 the whole network – not just the ICT implant – needs to be considered.“ Rafael Capurro, ISTAS 2010

Opinion „Freedom of Research: The freedom of research in this field should be subjected 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, ISTAS 2010

Opinion „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 severe damage of the individual‘s life.“ Rafael Capurro, ISTAS 2010

Opinion “ICT implants for non-medical purposes Mental functions and personal identity: ICT devices should not be used to manipulate mental functions or change personal identity ICT implants and personal data: the principles of data protection need to be applied to this area“ Rafael Capurro, ISTAS 2010

Opinion „Privacy and ICT implants: Provided that ICT devices are implanted in accordance with the principles outlined in this Opinion there is no need to declare these implants. They could and should remain unrecognizable to an external observer. The right to privacy includes the right to have an ICT implant.“ Rafael Capurro, ISTAS 2010

Opinion „ICT Implants and Enhancement of Physical and Mental capabilities Access to ICT implants for enhancement should be used only: To bring children or adults into the „normal“ range of the population, if they so wish and give their informed consent, or, To improve health prospects“ Rafael Capurro, ISTAS 2010

Opinion „The following possibilites should be banned: ICT implants as a basis for cyber-racism ICT implants used for changing the identity, memory, self perception and perception of others ICT implants used to enhance capabilities in order to dominate others ICT implants used for coercion towards others who do not use such devices“ Rafael Capurro, ISTAS 2010

Opinion „ICT Implants, Commercialisation and Consumer Interests It is essential that ICT devices are not put on the market without adequate control. For instance, products that can be regarded as medical products should be controlled according to the relevant legal framework.“ Rafael Capurro, ISTAS 2010

Opinion „ICT Implants for Surveillance Purposes ICT implants for surveillance in particular threaten human dignity. They 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, ISTAS 2010

Opinion „However, the EGE insists that such 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, ISTAS 2010

Opinion „Nevertheless the EGE does not favour such uses and considers that surveillance applications, under all circumstances, must be specified in 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, ISTAS 2010

Opinion „General Considerations Development of the Information Society 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.“ Rafael Capurro, ISTAS 2010

Opinion „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, ISTAS 2010

Opinion „Public Debate and Information 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.“ Rafael Capurro, ISTAS 2010

Opinion „The Member States and their national ethics councils (or corresponding institutions) have a responsibility to create conditions for education and constructive, well-informed debates in this area.“ Rafael Capurro, ISTAS 2010

Opinion „Democracy and Power Public debate and education are essential to ensure transparency and the Member States have a responsibility to ensure that the power of development and access to ICT implants are decided through democratic processes.“ Rafael Capurro, ISTAS 2010

Opinion „Need for Regulation It is clear that this field needs regulation. Currently, non-medical ICT implants in the human body are not explicitly covered by existing legislation, particularly in terms of privacy and data protection.“ Rafael Capurro, ISTAS 2010

Opinion „In the EGE‘s view, implantable devices for medical purposes should be regulated in the same way as drugs when the medical goal is the same, particularly as such implants are only partly covered by Council Directive 90/385/EEC on the approximation of the laws of the Member States relating to active implantable medical devices.“ Rafael Capurro, ISTAS 2010

Opinion „Impact Research and ICT Devices More research on the long term social, cultural and healt impact of different types of ICT implants needs to be carried out, with a particular focus on risk characterisation, risk assessment, risk management and risk communication. The EGE considers that this should be kept in mind for the Seventh EU Research Framework Programme. This sort of precautionary research in a rapidly developing field is of crucial importance.“ Rafael Capurro, ISTAS 2010

Opinion „Need for review The field of ICT implants is in its infancy and rapid developments are taking place that raise societal fears as well as hopes. Consequently, the EGE has addressed the key ethical issues regarding developmentsthat are current or can be foreseen at the present time.“ Rafael Capurro, ISTAS 2010

Opinion „However, it is clear that the EGE will have to return to this subject to update our advice in the light of future applications of ICT implants. (…) Consequently, we consider that a review of this Opinion by the EGE may be necessary in about three to five years time.“ Rafael Capurro, ISTAS 2010

Conclusion and Prospects The EGE recommended „More research on the long term social, cultural and healt impact of different types of ICT implants needs to be carried out, with a particular focus on risk characterisation, risk assessment, risk management and risk communication. The EGE considers that this should be kept in mind for the Seventh EU Research Framework Programme. This sort of precautionary research in a rapidly developing field is of crucial importance.“ Rafael Capurro, ISTAS 2010

Conclusion and Prospects Selection of EU projects that have been / are dealing with this matter: ETHICBOTS (2006-2007) (FP 6) ICTethics (2009-2011) (FP 7) EGAIS (2009-2011) (FP 7) ETICA (2009-2011) (FP 7) For a complete list of Research Programmes dealing with ethical questions of ICT under FP7 see: CORDIS Databank http://cordis.europa.eu/pf7 Rafael Capurro, ISTAS 2010

Three kinds of integration were analized: FP 6 2006-2008 http://ethicbots.na.infn.it/index.php Three kinds of integration were analized: Human-softbot integration, as achieved by AI research on information and communication technologies; Human-robot, non-invasive integration, as achieved by robotic research on autonomous systems inhabiting human environments; Physical, invasive integration, as achieved by bionic research. Rafael Capurro, ISTAS 2010

„Crucial ethical issues in these areas include the preservation of human identity, and integrity; applications of precautionary principles; economic and social discrimination; artificial system autonomy and accountability; responsibilities for (possibly unintended) warfare applications; nature and impact of human-machine cognitive and affective bonds on individuals and society.“ Rafael Capurro, ISTAS 2010

Rafael Capurro, ISTAS 2010

Conclusion and Prospects The ICTethics project – ICT that makes the difference The basis of the work is an investigation of the ESLA (Ethical, Social and Legal Aspects) of Ambient Intelligence & ICT for Security http://www.ictethics.eu/ Rafael Capurro, ISTAS 2010

Conclusion and Prospects Ambient Intelligence: Intelligent Environments: Personal Health Systems (PHS) Convergence of Physical, Mental and Virtual: Personal Humanoid Assistent (PHA) Internet of Things: Radio-Frequency Identification (RFID) ICT for Security: Biometrics Rafael Capurro, ISTAS 2010

Conclusion and Prospects ICT that makes the difference. The future of Ambient Intelligence and ICT for Security. International Conference, Brussels, Nov. 22-25, 2009 http://www.ictthatmakesthedifference.eu/index.html Rafael Capurro, ISTAS 2010

1. RFID. Implants and the human body Legal aspects 1. RFID. Implants and the human body Legal aspects of ICT implants Stefano Rodotà1, Diane Whitehouse2, Penny Duquenoy3 1 La Sapienza, Fondazione Basso, Rome (Italy) 2 The Castlegate Consultancy, (CITY) (United Kingdom) 3 Middlesex University (United Kingdom) Rafael Capurro, ISTAS 2010

2. Privacy. Toward an electronically identity? Legal concepts of human identity? Stefano Rodotà, La Sapienza, Fondazione Basso, Rome (Italy) On Interpreting and Constructing (Non-) Human Identities Rafael Capurro International Center for Information Ethics, Karlsruhe (Germany) DNA barcoding and personal genomics Giuseppe Novelli1 Tor Vergata University (Italy) Rafael Capurro, ISTAS 2010

Conclusion and Prospects EGAIS (Ethical GovernAnce of emergIng technologieS) (2009-2011) Aim of the project: to overcome the existent limitations of the current approaches to ethical governance in projects with technical development. http://www.egais-project.eu/?q=node/3 Rafael Capurro, ISTAS 2010

Conclusion and Prospects ETICA (2009-2011) Aim of the project: to identify ethical issues arising from information and communication technologies in the coming 10 to 15 years. http://www.etica-project.eu/ Rafael Capurro, ISTAS 2010

How far should we let ICT devices geht under our skins? Rafael Capurro, ISTAS 2010