Transcript Ethical Aspects of ICT Implants in the Human Body

Ethical Aspects of ICT
Implants in the Human Body
Rafael Capurro
European Group on Ethics in Science and New Technologies (EGE)
http://europa.eu.int/comm/european_group_ethics/index_en.htm
Hochschule der Medien (HdM) - University of Applied Sciences,
Stuttgart, Germany www.capurro.de
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
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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.
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EGE Members
1.
2.
Prof. Göran HERMERÉN (Sweden), President, Philosopher, Professor of Medical Ethics, Faculty
of Medicine, Lund University.
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.
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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
EGE-Newsletter "Ethically Speaking":
providing also information on the activities
of the National Ethics Committees.
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EGE Opinions 2001-2005
 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
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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 2005
- Online Version:
http://europa.eu.int/comm/european_group_ethics/
avis3_en.htm
- Printed Version (in English, French, and
German) includes „ICT Implants in the Human
Body“ A Review by Dr. Fabienne Nsanze.
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EGE Opinion: Objective
„(…) to raise awareness on questions
concerning the ethical dilemmas created
by a range of ICT implants in this rapidly
expanding field.“
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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™)
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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
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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)
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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
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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.“
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EGE Opinion: Ethical Background
Fundamental Ethical Principles:
Human Dignity
Non-instrumentalisation
Privacy
Non-discrimination
Informed Consent
Equity
The Precautonionary Principle
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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.“
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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.“
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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.“
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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?“
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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.“
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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.“
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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.“
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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.“
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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.“
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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.“
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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.“
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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.“
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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.“
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EGE Opinion: ICT implants for nonmedical 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.“
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EGE Opinion: ICT implants for nonmedical 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.“
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EGE Opinion: ICT implants for nonmedical 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.
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EGE Opinion: ICT implants for nonmedical 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.
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EGE Opinion: ICT implants for nonmedical 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.“
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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).“
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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.“
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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 decisionmaking or dogmatic proclamation.
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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.
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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.
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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.
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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.
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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
1993. The Steering Committee on Bioethics of the Council of Europe
dates from 1992.
 US President George W. Bush created The President’s Council on
Bioethics on the basis of the Executive Order 13237 from November
28, 2001 (http://www.bioethics.gov/).
 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, 62-66.
Online: http://www.degruyter.de/rs/280_7046_DEU_h.htm
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