Diversity as normalcy - Gallaudet University

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Diversity as Normalcy:
Research, Ethics and Social
Responsibility- Implications for
Education and Practice
James Giordano, PhD, MPhil.
Center for Neurotechnology Studies
Potomac Institute for Policy Studies
Arlington VA,USA
and
Wellcome Centre for Neuroethics
University of Oxford, Oxford, UK
Distinguished Visiting Professor, Gallaudet University
Core Premise

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Biological variation exists within
species, including humans
Biological variants are preserved
due to dynamically advantageous
characteristics and traits
This affords multi-variate
capability and vigor
Biological diversity is the
norm
Dynamical Biologic Diversity
Presence of trait X  function X
and other
functions
(with X-influence)
Non-presence of X  function Y
Y-modified
capabilities in
other functions
Systems’-based Expression
Biological traits and
characteristics are expressed as
an interactive function of
Genotype +/- Environment  Phenotype +/- Environment
Spectrum of phenotypic
expression(s)
Nature-via-Nurture
Internal
External
ENDO- PHENOTYPES
EXO- PHENOTYPES
Structure
Function
Environment
Environment
GENOTYPE
ORGANISM
Somatic State
Sensations
Perceptions/
Cognitions
Behaviors
EFFECTS
Manifest Characteristics
Spectrum Effect(s)
Decisional
(practical) Threshold
Spectrum Expression(s) =
(Genotype + Phenotype) +/- Environment
Individual and Group Variation
Genetic predisposition
Extant phenotype(s)
Epigenetic factors
Psychosocial reciprocity
Biological “Norms”
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Biological systems’ effects as
naturally expressed, in dynamic
interaction
Iterative
Based upon interplay of systems
within systems
Components within Organism
Organism within Environment
Biology AND ‘Culture’
Culture
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“Kultur”: “Urwelt und Umwelt”
Medium: for interaction of genotypic,
phenotypic and environmental variables
i.e.- a “crucible”
Forum: for the expression of such variables
as bio-psycho-social dynamic
i.e.- a “setting”
BOTH establish, conditions, attractors and
constraints
Human “Nature”, Hearing,
Deafness
What “nature”?
Doctrinal?
Statistical?
Constructivist?
What norm?
Biological?
Psychological?
Social?
Ontology vs Operation
Entity vs Effectuation
What we “Are” vs How we “Act”
Being vs Doing
What is the Relation?
Scientific Perspectives
Ontology vs Operation
What can/does science provide about
human nature?
Does “What we do (or cannot do)”
determine “What we are”?
On What Level?
Biological-Psychological-Social
Caution and Prudence Required…
Science, Technology and
Biocentric Definitions
Affect:
 Activity – what we “do”
 Stature –what we “are”
 Status-what we “mean”
 Morality-how/why we make
decisions
 Mores-how/why we behave
(individually and in groups)
Consistency with Philosophical
Tasks
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Epistemic: what we know, how we
know it
Anthropologic: utility and use in the
human dimension and condition
Ethical: the “good” of any such utility
and use
The “Ethical Turn”:
What is the “Good”?
How do these constructs impact scope and
nature…
1.
Technologic applications
2.
Research
3. Clinical medicine
4. Philosophical precepts (“bioontologies”)
5. Ethics
6. Daily life - individually, communally
Good Entails Right
“Recta ratio speculabilium; recta ratio
agibilium” Aquinas
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Right use of knowledge critical to
“good” use in application(s)
Caveat against:
•
•
•
•
Misinterpretation
“Cherry picking”
Inapt use
Frank misuse
Lessons from History
Galton
Pearson
von Verschuer
Lest we Forget

The power of biomedico-legal fusion

The work of Dr.med.Alfred Hoche, and
Dr. jur. Karl Binding (1920):
“Die Freigabe der Vernichtung
lebensunwertes Lebens”
(Releasing Restriction upon the Destruction of Lives
Unworthy of Life)
Conflation of biology, norms and social
value/worth
Lessons Learned?
Have We Considered Premises
and Implications…
AB 2702 (USA)?
Human Fertilisation and
Embryology Act (UK)?
Implicit/Explicit Ontological
Assertions
Name
Instantiation of Identity
Frame
Identification of Commonality
Claim
Commonality of Stature, Status,
Treatment
Deafness: Diagnosis, Dis-ability,
Declaration?
Reflects Dissonance, Tension, Conflict in
Normative Value(s)/Criteria/Thresholds
Biologic: Variant geno/phenotype
Epidemiologic frequency as a norm
Psychologic: Subjective experience
Objective Influence (e.g.- DSM-criteria)
Social: Socio-political construct
Reconciling Dissonance
Alignment of Bio-Psycho-Social Norming

Primacy of Biological Model:
• Genotypic and/or Phenotypic

Complementarity-Outcome Construct
• Establishes “Baseline” Medical Norm

Sets Threshold (for Psycho-social Effect):
• Normality and Autonomous Capability
• Existential Value(s): Gain vs Loss
• Treatment/Enhancement Issue(s)
The Burden of Science and
Technology
With great capability (of
cognition, machination, manipulation,
technology, to help, heal, and harm)
comes great responsibility (to
use
each and all in measured means, and in
ways that reflect technical rectitude,
sensitivity and moral soundness).
Faustian Bargain
Faust:
I wonder…should I?
Mephistopheles:
You stand stock still and stare,
as if before the lecture hall,
…there, in the flesh – physics and
metaphysics – are there…
Come let’s go…
…but what of the dangers that you will
know?
Remember that blood-guilt you might bring
down –from your own hand – shall be
upon the town.
Toward a “Fix”
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Not to simply retard progress….
Rather, assume Arendtian
stance:
• Need to mitigate non-contemplative
advancement (i.e.- animal laborens)
• Instantiate reflective analyses
before and during technologic
development and use – and/or nonuse (i.e.- Homo faber)
Instantiations and Applications

Research:
• What is studied?
• How it is studied?
• By whom?
• For whom?
• To what end(s)?
Instantiations and Applications

Education
“If one wishes to create evil, one needs
only choose what is taught as the ‘good’”
Nietzsche
-Translation of research into pedagogical
methods
-Integration of research findings into
curricula
-Reciprocal integration of education to
research
Instantiations and Applications

Practice(s)
• Healthcare

As the “…most human of the sciences and most scientific of
the humanities”
• Social sciences
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Toward initiating the discourse in history, anthropology and
sociology
• Humanities
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Philosophical premises and dialectics
Depiction and exploration in the arts
• Public life
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Philosophy as historical discourse; ethics as human ecology
• Policy and law
Each and all require educational address
and explication
Keeping Ethics In-STEP with
Scientific Progress
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Integration of Science,
Technology, Ethics and Policy in
• Research
• Education
• Practice
As an Educational and Practical
Paradigm
In the Arendtian Spirit
Reflection, insight and moral
pause must precede and
accompany all future acts of
inquiry, invention and
intervention…
“Measure twice, cut once”, for all too
often, there is no turning back.
Selected Bibliography
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Allen GE. The ideology of elimination: American and
German eugenics 1900-1945. In; Nicosia FR, Huerner J.
(eds. )Medicine and Medical Ethics in Nazi Germany.
Berghahn Books, NY, 2002; p.13-39.
Deichmann U. Biologists Under Hitler. Harvard, Cambridge,
1996
Gini A, Rossi J, Giordano J. Considering enhancement (and
treatment): On the need to regard contingency and develop
dialectic evaluation. AJOB-Neurosci 2010; 1(1): 25-27.
Giordano J, Gordijn B. (eds.) Scientific and Philosophic
Perspectives in Neuroethics. Cambridge University Press,
Cambridge, 2010.
Giordano J, Benedikter R. The future of humanity:
Biotechnology and trans- and post-human possibilities. J
Futures Studies 6:6: 55-78 (2010)
Giordano J. The mechanistic paradox: Science, technology,
ethics and policy in relation. Synesis 2010 1(1): G1-4.
Haller MH. Eugenics. Rutgers University Press, NJ, 1984.
Patil T, Giordano J. On the ontological assumptions of the
medical model of psychiatry. Phil Ethics Hum Med 2010;
5(3).
Acknowledgements
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Supported in part by the Nour
Foundation; Institute for
BioTechnology Futures; The William
H. and Sara Crane Schaefer
Endowment of Gallaudet University;
and the Potomac Institute for Policy
Studies
Thanks to Sherry Loveless for graphic
artistry
Discourse,
Dialectic…Expression
International Ethics consortium
Gallaudet University
Georgetown University
University of Michigan
University of Mississippi
US Naval Medical Institute
University of Bristol, UK
University of Botswana
University of Texas, Southwestern
University of Texas, Health Sciences Center
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