Ethics of Ambient Assisted Living Technologies for Persons with Dementia

364 Pages·2016·1.32 MB·English

peter novitzky
E T H I C S O F A M B I E N T A S S I S T E D L I V I N G T E C H N O L O G I E S F O R
P E R S O N S W I T H D E M E N T I A
E T H I C S O F A M B I E N T A S S I S T E D L I V I N G
T E C H N O L O G I E S F O R P E R S O N S W I T H D E M E N T I A
peter novitzky
ThLic., M.A., MSc.
A Dissertation submitted in fulfilment of the
requirements for the award of
Doctor of Philosophy (Ph.D.)
to the
Dublin City University
School of Computing
Prof Bert Gordijn
Prof Alan F. Smeaton
(supervisory panel)
January 2016
Peter Novitzky: Ethics of Ambient Assisted Living Technologies for Persons with Dementia,
© January 2016
D E C L A R AT I O N
I hereby certify that this material, which I now submit for assessment on the programme
of study leading to the award of Ph.D. is entirely my own work, that I have exercised
reasonable care to ensure that the work is original, and does not to the best of my
knowledge breach any law of copyright, and has not been taken from the work of others
save and to the extent that such work has been cited and acknowledged within the text
of my work.
Signed: ID No.: 12210395 Date: 04/01/2016
A C K N O W L E D G M E N T S
My first and foremost thanks goes to my supervisors Prof Bert Gordijn, and Prof Alan F.
Smeaton. Their contribution to the successful completion of this thesis was invaluable,
as was their continuous support during the times of joy but also despair, which cannot
be emphasised enough.
I would also like to express my thanks to all the people at CLARITY – Centre For
Sensor Web Technologies, Dublin City University, and INSIGHT – Centre For Data Ana-
lytics who supported me in my work, particularly, Renaat Verbruggen, Eamon Newman,
Tim Jacquemard, Deirdre Sheridan, Margaret Malone, Jonny Hobson, as well as many
others.
I wish to express my deep gratitude to my family, those passed away and alive, who
supported or contributed to the success of my work. Special thanks goes to Valerie and
Cynthia for their adamant encouragement.
Finally, this research Ph.D would not be possible without the funding received from
the European Community’s Seventh Framework Programme (FP7/2007–2013) under
grant agreement 288199 –
C O N T E N T S
1 introduction 1
1.1 Research Objectives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
1.2 Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
1.2.1 First Research Objective: Ethical Challenges and Opportunities . . 2
1.2.2 Second Research Objective: Interpretation of UDBHR Principles . 2
1.2.3 Third Research Objective: Normative Analysis of Ethical Issues . . 10
1.2.4 Fourth Research Objective: Conclusions of the Ethical Analysis . . 15
1.3 Relevance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
1.4 Outline of the Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
2 terminology 19
2.1 Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
2.1.1 History of Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
2.1.2 Diagnosis of Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . 22
2.1.3 Care and Treatment of Dementia . . . . . . . . . . . . . . . . . . . . 29
2.2 Ambient Assisted Living . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
2.2.1 Classification of Ambient Assisted Living Technologies . . . . . . 35
3 a review of contemporary work on the ethics of ambient as-
sisted living technologies for persons with dementia 45
3.1 Scope of Review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
3.2 Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
3.2.1 Terminology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
3.2.2 Frequency of Occurrence of Most Ethically Relevant Terms . . . . 48
3.3 Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49
3.3.1 Persons with Dementia . . . . . . . . . . . . . . . . . . . . . . . . . 50
3.3.2 Formal and Informal Care-Givers (Nurses, Family Proxies) . . . . 56
3.3.3 Researchers and Clinicians . . . . . . . . . . . . . . . . . . . . . . . 58
3.3.4 (Software/Hardware) Engineers . . . . . . . . . . . . . . . . . . . . 61
3.3.5 Designers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65
3.3.6 Technicians . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
3.4 Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68
3.4.1 Value of the Goals of AAL Technologies . . . . . . . . . . . . . . . 69
3.4.2 Special Vulnerability of PwDs in Their Private Homes . . . . . . . 72
3.4.3 Informed Consent . . . . . . . . . . . . . . . . . . . . . . . . . . . . 74
3.5 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76
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contents
4 value of the goals of aal technologies 77
4.1 Interpretation of the Principle . . . . . . . . . . . . . . . . . . . . . . . . . . 78
4.1.1 Principle of the UDBHR . . . . . . . . . . . . . . . . . . . . . . . . . 78
4.2 Policy Documents and Academic Literature . . . . . . . . . . . . . . . . . 86
4.2.1 Policy Documents . . . . . . . . . . . . . . . . . . . . . . . . . . . . 86
4.2.2 Academic Literature . . . . . . . . . . . . . . . . . . . . . . . . . . . 89
4.3 Specification of Article 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 104
4.3.1 Clinical Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105
4.3.2 Clinical Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111
4.4 Balancing of Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 124
4.4.1 Principles Conflicting with Article 4 . . . . . . . . . . . . . . . . . . 124
4.5 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125
5 special vulnerability and personal integrity of persons with
dementia and ambient assisted living technologies 129
5.1 Interpretation of the Principle . . . . . . . . . . . . . . . . . . . . . . . . . . 130
5.1.1 Principle of the UDBHR . . . . . . . . . . . . . . . . . . . . . . . . . 130
5.2 Policy Documents and Academic Literature . . . . . . . . . . . . . . . . . 146
5.2.1 Policy Documents . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146
5.2.2 Academic Literature . . . . . . . . . . . . . . . . . . . . . . . . . . . 151
5.3 Specification of Article 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 164
5.3.1 Clinical Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 165
5.3.2 Clinical Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 169
5.4 Balancing of Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 172
5.4.1 Principles Conflicting with Article 8 . . . . . . . . . . . . . . . . . . 172
5.5 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179
5.5.1 Vulnerability of PwDs Based on UDBHR . . . . . . . . . . . . . . . 179
5.5.2 Personal Integrity of PwDs Involved in Research or Therapy . . . 181
6 informed consent of people with dementia 183
6.1 Interpretation of Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . 184
6.1.1 Principles of the UDBHR . . . . . . . . . . . . . . . . . . . . . . . . 184
6.2 Policy Documents and Academic Literature . . . . . . . . . . . . . . . . . 209
6.2.1 Policy Documents . . . . . . . . . . . . . . . . . . . . . . . . . . . . 209
6.2.2 Academic Literature . . . . . . . . . . . . . . . . . . . . . . . . . . . 215
6.3 Specification of the UDBHR Principles . . . . . . . . . . . . . . . . . . . . . 239
6.3.1 Clinical Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 239
6.3.2 Clinical Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 245
6.4 Balancing of Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 249
6.4.1 Principles Conflicting with Article 6 . . . . . . . . . . . . . . . . . . 249
6.4.2 Principles Conflicting with Article 7 . . . . . . . . . . . . . . . . . . 249
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