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Public perception and
attitudes to biobanks and
biotechnology:
What do we know?
Of impact for REC?
Torben Hviid Nielsen
Sept. 2012
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Overview
I. Attitudes towards biobanks
II. Expectations to bio- and
gentechnology
III. A warning
IV. Four patterns in applied “public”
ethics
V. Three discussions
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I. Attitudes towards biobanks
a. Very low awareness
b. Low willingness to provide
information
c. Mixed/miscellaneous
concern
d. Demand for specific
consent
e. Strict regulation: external -
internal
Data:
- «Biotechnology».
Special
Eurobarometer 73.1
(2010).
- European
Commission:
European and
Biotechnology in
2010. «Winds of
change?»
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a. Awareness of biobanks
Winds of change?: 60
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b. Willingness to provide
information
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c. Types and level of concern
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d. Form of consent
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d. Consent for biobank research
Winds of change?: 66
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e. Regulation of biobanks
Winds of change?: 67
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II. Expectations to
bio/gentechnology in general a. Medium among new
technologies
b. Time series
– Declining in the 90’s
– Increasing in the 00’s
– New decline?
c. High expectations to
medical applications, low to
food
Data:
Eurobarometer 39.1,
46.1, 52.1, 64.3, 73.1
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a. Expectations to new
Technologies, EU 2010
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b. Expectations to new
Technologies, EU 1991-2010
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c. «Applications» of bio- and
gentechnology. EU27, 2010
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d. «New» Technologies and Expectations.
The Agenda. EU. 1978 & 2010
0 % 20 % 40 % 60 % 80 % 100
%
Synthetic food
Data on people
Genetics
Nuclear power
Synthetic material
Sattelites
Energy sources
Org. Transplan.
Worthwhile
No interest
Unacceptable risk
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III. A warning
• Survey as a poor measurement of public
opinion
• «Gallup-democracy» and representative
democracy
Majority
• Democracy Values
«Truth»
• Is / ought, «the naturalist fallacy»
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IV. Four patterns in applied
“public” ethics
a. Ethics as veto
b. Dignity versus utility
c. Black and green scepticism
d. Trust and experts: “evaluating the
evaluator”
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a. Ethics as veto:
Perception of Usefulness, Risk and Ethics as
Determinant of Encouragement.
Nature, 387, 26. June 1987
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b. Dignity and utility
Two ethical / legal principles:
Recital 16: Dignity
Affirms «fundamental
principles safegarding the
dignity and integrity of the
person»
Recital 17: Utility
The patent system should
encourage the production of
medicines «derived from
elements isolated from the
human body»
Directive 98/44/EC
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b. «Dignity» versus «utility»
«Europe’s Ethical
Divide».
Gaskell et.al. Nature,
Biotechnology. Vol 30,
no. 5, may 2012: 392-94.
¤
Split or divide?
Within or among nations?
Winds of Change?: 59
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c. The blue and the green scepticims. The
arguments
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c. The blue and the green scepticims. The
segments.
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d. Trust and experts «The evaluation of the evaluator»
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V. Three discussions
a. Ethics as a bag full
b. Ethics as / in Law
c. Autonomy versus pluralism: The
state-liberal dilemma
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a. Ethics as a bag full
Ethics
Focus Horizon
Arete / Duty
(Aristotle / Kant)
Absolute limits Religion
Utilitarian (Bentham / Mill)
Cost-benefit Economy
Discourse (Habermas)
Deliberative
democracy,
consensus
Politics
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b. Ethics as / in Law
„Recht und Moral standen bisher in einem
Ergänzungsverhältnis zu Wissenschaft,
Technik und Wirtschaft als den
Schrittmacher der Modernisierung. Aber
welche Seite wird sich an die andere
anpassen, wenn bestimmte, durch
gentechnische Fortschritte möglich
gewordene Praktiken unser
Selbstverständnis als moralisch handelnde
Personen einmal ein terminieren sollten?
Habermas, 2002
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c. Autonomy versus pluralism:
The state-liberal dilemma
Freedom
«The only freedom which
deserves the name, is that
of pursuing our own good in
our own way, so long as we
do not attempt to deprive
others of theirs, or impede
their efforts to obtain it»
Society’s jurisdiction
«As soon as any part of a
person’s conduct affects
prejudicially the interests of
others, society has
jurisdiction over it, and the
question whether the
general welfare will or will
not be promoted by
interfering with it, becomes
open to discussion»
John Stuart Mill, On Liberty 1975 (1859): 18 & 92-93