The document discusses ethical aspects of implanting information and communication technology (ICT) devices in the human body. It summarizes Opinion No. 20 issued by the European Group on Ethics in Science and New Technologies, which examines the ethical issues arising from ICT implants. The opinion addresses concerns regarding threats to human dignity, autonomy and privacy from implants that can permanently track individuals or remotely change the information contained. It notes some implants require special precaution due to risks of being difficult to remove, influencing psychic functions, or enabling social surveillance and manipulation.
1. 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
2. Rafael Capurro, ISTAS 2010 2
Overview
Introduction
EGE Opinion No 20
Scientific and technical background
Legal Aspects
Ethical Aspects
Prospects
3. Introduction
The European Group on Ethics in
Science and New Technologies to the
European Commission
Rafael Capurro, ISTAS 2010 3
4. 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 4
5. 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 5
6. 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 6
7. 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 7
9. Opinion No 20
Ethical aspects of ICT implants in the
human body (16 March 2005).
Opinion produced on the direct initiative of the
Rafael Capurro, ISTAS 2010 9
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.
10. 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 10
11. 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 11
12. Introduction
„The intimate relation between bodily
and psychic functions is basic to our
personal identity.“
Rafael Capurro, ISTAS 2010 12
13. 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 13
14. Scientific and Technical Background
Current Applications and Research
Applications: ICT Implants on the market
Active medical devices:
Rafael Capurro, ISTAS 2010 14
15. 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 15
16. 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 16
17. 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 17
18. 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 18
19. 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 19
20. 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 20
21. Categorisation of ICT Implants
Implantable devices can be categorised as:
medical
non-medical
Rafael Capurro, ISTAS 2010 21
Both as:
passive
active
Reversible or non reversible
Stand-alone or online
ICT implants and tags
22. 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 22
23. 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 23
24. 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 24
25. 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 25
26. 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 26
27. Legal Background
„Both circumstances are clearly in
conflict with data protection rules
concerning collection and processing
of the information.“
Rafael Capurro, ISTAS 2010 27
28. 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 28
29. 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 29
30. 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 30
31. Ethical Background
„Contemporary society is confronted
with changes that have to do with the
anthropological essence of
individuals.“
Rafael Capurro, ISTAS 2010 31
32. 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 32
33. 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 33
34. Ethical Background
Fundamental ethical principles:
Human Dignity
Non-instrumentalisation
Privacy
Non-discrimination
Informed Consent
Equity
The precautionary principle
Rafael Capurro, ISTAS 2010 34
35. 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 35
36. 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 36
37. Ethical Background
„Freedom of researchers may conflict
with the obligation to safeguard the
health of research subjects.“
Rafael Capurro, ISTAS 2010 37
38. 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 38
39. Ethical Background
„Some Important Knowledge Gaps
Regarding ICT Implants in the Human
Body:
Rafael Capurro, ISTAS 2010 39
40. 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 40
41. 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 41
42. Ethical Background
„Enhancement and Self Awareness
What does perfectibility of human beings
Rafael Capurro, ISTAS 2010 42
mean?
How far should the use of such implants
to enhance human capabilities be
allowed?“
43. 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 43
44. Ethical Background
„ICT Implants for which special
caution is necessary:
ICT implants that cannot be removed
Rafael Capurro, ISTAS 2010 44
easily
ICT implants that influence, determine of
change psychic functions
ICT implants that could be misused for
social surveillance and manipulation
Military applications“
45. Rafael Capurro, ISTAS 2010 45
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.“
46. Rafael Capurro, ISTAS 2010 46
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“.
47. Rafael Capurro, ISTAS 2010 47
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.“
48. Rafael Capurro, ISTAS 2010 48
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.“
49. Rafael Capurro, ISTAS 2010 49
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.“
50. Rafael Capurro, ISTAS 2010 50
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.“
51. Rafael Capurro, ISTAS 2010 51
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.“
52. Rafael Capurro, ISTAS 2010 52
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“
53. Rafael Capurro, ISTAS 2010 53
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.“
54. Rafael Capurro, ISTAS 2010 54
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“
55. Rafael Capurro, ISTAS 2010 55
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“
56. Rafael Capurro, ISTAS 2010 56
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.“
57. Rafael Capurro, ISTAS 2010 57
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).“
58. 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 58
59. 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 59
60. Rafael Capurro, ISTAS 2010 60
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.“
61. Rafael Capurro, ISTAS 2010 61
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).“
62. Rafael Capurro, ISTAS 2010 62
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.“
63. Rafael Capurro, ISTAS 2010 63
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.“
64. Rafael Capurro, ISTAS 2010 64
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.“
65. Rafael Capurro, ISTAS 2010 65
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.“
66. Rafael Capurro, ISTAS 2010 66
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.“
67. Rafael Capurro, ISTAS 2010 67
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.“
68. Rafael Capurro, ISTAS 2010 68
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.“
69. 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 69
70. 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 70
71. Conclusion and Prospects
Selection of EU projects that have been / are dealing with
Rafael Capurro, ISTAS 2010 71
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
72. FP 6 2006-2008
http://ethicbots.na.infn.it/index.php
Three kinds of integration were analized:
(a) Human-softbot integration, as achieved by AI
research on information and communication
technologies;
(b) Human-robot, non-invasive integration, as achieved
by robotic research on autonomous systems
inhabiting human environments;
(c) Physical, invasive integration, as achieved by bionic
Rafael Capurro, ISTAS 2010 72
research.
73. „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 73
75. 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 75
76. 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 76
77. 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 77
78. 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 78
79. 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 79
80. 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 80
81. 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 81
82. How far should we let
ICT devices geht under
our skins?
Rafael Capurro, ISTAS 2010 82