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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 - PowerPoint PPT Presentation
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Diversity as Normalcy:Diversity as Normalcy: Research, Ethics and Social Research, Ethics and Social
Responsibility- Implications for Responsibility- Implications for
EducationEducation and Practiceand PracticeJames Giordano, PhD, MPhil.James Giordano, PhD, MPhil.Center for Neurotechnology StudiesCenter for Neurotechnology StudiesPotomac Institute for Policy StudiesPotomac Institute for Policy Studies
Arlington VA,USAArlington VA,USAandand
Wellcome Centre for NeuroethicsWellcome Centre for Neuroethics University of Oxford, Oxford, UKUniversity of Oxford, Oxford, UK
Distinguished Visiting Professor, Gallaudet UniversityDistinguished Visiting Professor, Gallaudet University
Core PremiseCore Premise
Biological variation exists within Biological variation exists within species, including humansspecies, including humans
Biological variants are preserved Biological variants are preserved due to dynamically advantageous due to dynamically advantageous characteristics and traitscharacteristics and traits
This affords multi-variate This affords multi-variate capability and vigorcapability and vigor
Biological diversity is the normBiological diversity is the norm
Dynamical Biologic DiversityDynamical Biologic Diversity
Presence of trait X Presence of trait X function X function X
and other and other functions functions
(with X-influence)(with X-influence)
Non-presence of X Non-presence of X function Y function Y
Y-modified Y-modified capabilities in capabilities in
other functions other functions
Systems’-based ExpressionSystems’-based Expression
Biological traits and Biological traits and characteristics are expressed as characteristics are expressed as
an interactive function ofan interactive function of
Genotype +/- Environment Genotype +/- Environment Phenotype +/- Environment Phenotype +/- Environment
Spectrum of phenotypic Spectrum of phenotypic expression(s)expression(s)
Nature-via-NurtureNature-via-Nurture Internal External
En
viro
nm
ent E
nviro
nm
ent
GENOTYPE
ENDO- PHENOTYPES
EXO- PHENOTYPES
Structure
ORGANISM
Somatic State
EFFECTS
Perceptions/CognitionsSensations
Function
Behaviors
Spectrum Effect(s)Spectrum Effect(s)
Decisional (practical) Threshold
Man
ifes
t C
har
acte
rist
ics
Spectrum Expression(s) =(Genotype + Phenotype) +/- Environment
Individual and Group VariationIndividual and Group Variation
Genetic predispositionGenetic predisposition
Extant phenotype(s)Extant phenotype(s)
Epigenetic factorsEpigenetic factors
Psychosocial reciprocityPsychosocial reciprocity
Biological Biological ““Norms”Norms”
Biological systems’ effects as Biological systems’ effects as naturally expressed, in dynamic naturally expressed, in dynamic interactioninteraction
IterativeIterative Based upon interplay of systems Based upon interplay of systems
within systemswithin systemsComponents within OrganismComponents within OrganismOrganism within EnvironmentOrganism within Environment
Biology AND ‘Culture’Biology AND ‘Culture’
CultureCulture ““KulturKultur”: “”: “Urwelt und UmweltUrwelt und Umwelt”” MediumMedium: for interaction of genotypic, : for interaction of genotypic,
phenotypic and environmental variablesphenotypic and environmental variablesi.e.- a “crucible”i.e.- a “crucible”
ForumForum: for the expression of such variables : for the expression of such variables as bio-psycho-social dynamicas bio-psycho-social dynamici.e.- a “setting”i.e.- a “setting”
BOTH establish, conditions, attractors and BOTH establish, conditions, attractors and constraintsconstraints
Human “Nature”, Hearing, Human “Nature”, Hearing, DeafnessDeafness
What “nature”?What “nature”?Doctrinal?Doctrinal?Statistical?Statistical?
Constructivist?Constructivist?
What norm?What norm?Biological?Biological?
Psychological?Psychological?Social?Social?
Ontology vs OperationOntology vs Operation
Entity vs EffectuationEntity vs Effectuation
What we “What we “AreAre” vs How we “” vs How we “ActAct””
Being vs DoingBeing vs Doing
What is the Relation?What is the Relation?
Scientific PerspectivesScientific PerspectivesOntology vs OperationOntology vs Operation
What can/does science provide about What can/does science provide about human nature?human nature?
Does “Does “What we do (or cannot do)”What we do (or cannot do)” determine “determine “What we areWhat we are”?”?
On What Level?On What Level?
Biological-Psychological-SocialBiological-Psychological-Social
Caution and Prudence Required…Caution and Prudence Required…
Science, Technology and Science, Technology and Biocentric DefinitionsBiocentric Definitions
Affect:Affect: Activity – what we “do”Activity – what we “do” Stature –what we “are”Stature –what we “are” Status-what we “mean”Status-what we “mean” Morality-how/why we make Morality-how/why we make
decisionsdecisions Mores-how/why we behave Mores-how/why we behave
(individually and in groups)(individually and in groups)
Consistency with Philosophical Consistency with Philosophical TasksTasks
EpistemicEpistemic: what we know, how we : what we know, how we know itknow it
AnthropologicAnthropologic: utility and use in the : utility and use in the human dimension and conditionhuman dimension and condition
Ethical:Ethical: the “good” of any such utility the “good” of any such utility and useand use
The “Ethical Turn”:The “Ethical Turn”:What is the “What is the “GoodGood”?”?
How do these constructs impact scope and How do these constructs impact scope and nature… nature…
1.1. Technologic applications Technologic applications 2.2. Research Research 3. Clinical medicine3. Clinical medicine4. Philosophical precepts (“bio-4. Philosophical precepts (“bio-
ontologies”)ontologies”)5. Ethics 5. Ethics 6. Daily life - individually, communally6. Daily life - individually, communally
Good Entails RightGood Entails Right
““Recta ratio speculabilium; recta ratio Recta ratio speculabilium; recta ratio agibiliumagibilium” ” AquinasAquinas
Right use of knowledge critical to Right use of knowledge critical to “good” use in application(s)“good” use in application(s)
Caveat against:Caveat against:• MisinterpretationMisinterpretation• ““Cherry picking”Cherry picking”• Inapt useInapt use• Frank misuseFrank misuse
Lessons from HistoryLessons from History
GaltonGalton PearsonPearson von Verschuervon Verschuer
Lest we ForgetLest we Forget The power of biomedico-legal fusionThe power of biomedico-legal fusion
The work of The work of DDr.medr.med.Alfred Hoche, and .Alfred Hoche, and Dr. jur. Dr. jur. Karl Binding (1920):Karl Binding (1920):
““Die Freigabe der Vernichtung Die Freigabe der Vernichtung lebensunwertes Lebens”lebensunwertes Lebens”
((Releasing Restriction upon the Destruction of Lives Releasing Restriction upon the Destruction of Lives Unworthy of LifeUnworthy of Life))
Conflation of biology, norms and social Conflation of biology, norms and social value/worthvalue/worth
Lessons Learned?Lessons Learned?
Have We Considered Premises Have We Considered Premises and Implications…and Implications…
AB 2702AB 2702 (USA)? (USA)?
Human Fertilisation and Human Fertilisation and EmbryologyEmbryology Act Act (UK)? (UK)?
Implicit/Explicit Ontological Implicit/Explicit Ontological AssertionsAssertions
NameName
Instantiation of IdentityInstantiation of Identity
FrameFrame
Identification of CommonalityIdentification of Commonality
ClaimClaim
Commonality of Stature, Status, Commonality of Stature, Status, TreatmentTreatment
Deafness: Diagnosis, Dis-ability, Deafness: Diagnosis, Dis-ability, Declaration?Declaration?
Reflects Dissonance, Tension, Conflict in Reflects Dissonance, Tension, Conflict in Normative Value(s)/Criteria/ThresholdsNormative Value(s)/Criteria/Thresholds
Biologic:Biologic: Variant geno/phenotype Variant geno/phenotypeEpidemiologic frequency as a normEpidemiologic frequency as a norm
Psychologic:Psychologic: Subjective experience Subjective experienceObjective Influence (e.g.- DSM-criteria)Objective Influence (e.g.- DSM-criteria)
Social:Social: Socio-political construct Socio-political construct
Reconciling DissonanceReconciling Dissonance
Alignment of Bio-Psycho-Social NormingAlignment of Bio-Psycho-Social Norming
Primacy of Biological Model:Primacy of Biological Model:• Genotypic and/or PhenotypicGenotypic and/or Phenotypic
Complementarity-Outcome ConstructComplementarity-Outcome Construct• Establishes “Baseline” Medical Norm Establishes “Baseline” Medical Norm
Sets Threshold (for Psycho-social Effect):Sets Threshold (for Psycho-social Effect):• Normality and Autonomous CapabilityNormality and Autonomous Capability• Existential Value(s): Gain vs LossExistential Value(s): Gain vs Loss• Treatment/Enhancement Issue(s)Treatment/Enhancement Issue(s)
The Burden of Science and The Burden of Science and TechnologyTechnology
With great capability (With great capability (of cognition, of cognition, machination, manipulation, technology, to machination, manipulation, technology, to
help, heal, and harmhelp, heal, and harm) ) comes great responsibility (comes great responsibility (to use to use
each and all in measured means, and in each and all in measured means, and in ways that reflect technical rectitude, ways that reflect technical rectitude,
sensitivity and moral soundnesssensitivity and moral soundness).).
Faustian BargainFaustian Bargain
Faust:Faust: I wonder…should I?I wonder…should I?
Mephistopheles:Mephistopheles:You stand stock still and stare, You stand stock still and stare, as if before the lecture hall,as if before the lecture hall,……there, in the flesh – physics and there, in the flesh – physics and
metaphysics – are there…metaphysics – are there… Come let’s go…Come let’s go………but what of the dangers that but what of the dangers that
you will know? you will know? Remember that blood-guilt you Remember that blood-guilt you
might bring down –from your might bring down –from your own hand – shall be upon the own hand – shall be upon the town.town.
Toward a “Fix”Toward a “Fix”
Not to simply retard progress….Not to simply retard progress…. Rather, assume Arendtian Rather, assume Arendtian
stance:stance:• Need to mitigate non-contemplative Need to mitigate non-contemplative
advancement (advancement (i.e.- i.e.- animal laborensanimal laborens))
• Instantiate reflective analyses Instantiate reflective analyses before and during technologic before and during technologic development and use – and/or non-development and use – and/or non-use (i.e.- use (i.e.- Homo faberHomo faber))
Instantiations and ApplicationsInstantiations and Applications
Research:Research:• What is studied?What is studied?• How it is studied? How it is studied? • By whom? By whom? • For whom? For whom? • To what end(s)?To what end(s)?
Instantiations and ApplicationsInstantiations and Applications
EducationEducation““If one wishes to create evil, one needs If one wishes to create evil, one needs
only choose what is taught as the ‘good’”only choose what is taught as the ‘good’”NietzscheNietzsche
-Translation of research into pedagogical -Translation of research into pedagogical methodsmethods
-Integration of research findings into -Integration of research findings into curriculacurricula
-Reciprocal integration of education to -Reciprocal integration of education to researchresearch
Instantiations and ApplicationsInstantiations and Applications
Practice(s)Practice(s)• HealthcareHealthcare
As the “…most human of the sciences and most scientific of As the “…most human of the sciences and most scientific of the humanities”the humanities”
• Social sciencesSocial sciences Toward initiating the discourse in history, anthropology Toward initiating the discourse in history, anthropology
and sociologyand sociology• HumanitiesHumanities
Philosophical premises and dialecticsPhilosophical premises and dialectics Depiction and exploration in the artsDepiction and exploration in the arts
• Public lifePublic life Philosophy as historical discourse; ethics as human ecologyPhilosophy as historical discourse; ethics as human ecology
• Policy and lawPolicy and law
Each and all require educational address Each and all require educational address and explicationand explication
Keeping Ethics Keeping Ethics In-STEPIn-STEP with with Scientific ProgressScientific Progress
InIntegration of tegration of SScience, cience,
TTechnology, echnology, EEthics and thics and PPolicy inolicy in• ResearchResearch• EducationEducation• PracticePractice
As an Educational and Practical As an Educational and Practical ParadigmParadigm
In the Arendtian SpiritIn the Arendtian Spirit
Reflection, insight and moral Reflection, insight and moral pause must precede and pause must precede and
accompany all future acts of accompany all future acts of inquiry, invention and inquiry, invention and
intervention…intervention…
““Measure twice, cut once”, for all too Measure twice, cut once”, for all too often, there is no turning back.often, there is no turning back.
Selected BibliographySelected Bibliography
Allen GE. The ideology of elimination: American and German Allen GE. The ideology of elimination: American and German eugenics 1900-1945. In; Nicosia FR, Huerner J. eugenics 1900-1945. In; Nicosia FR, Huerner J. (eds. )(eds. )Medicine and Medical Ethics in Nazi GermanyMedicine and Medical Ethics in Nazi Germany. . Berghahn Books, NY, 2002; p.13-39.Berghahn Books, NY, 2002; p.13-39.
Deichmann U. Deichmann U. Biologists Under HitlerBiologists Under Hitler. Harvard, Cambridge, . Harvard, Cambridge, 1996 1996
Gini A, Rossi J, Giordano J. Considering enhancement (and Gini A, Rossi J, Giordano J. Considering enhancement (and treatment): On the need to regard contingency and develop treatment): On the need to regard contingency and develop dialectic evaluation. dialectic evaluation. AJOB-Neurosci AJOB-Neurosci 2010; 1(1): 25-27.2010; 1(1): 25-27.
Giordano J, Gordijn B. (eds.) Giordano J, Gordijn B. (eds.) Scientific and Philosophic Scientific and Philosophic Perspectives in NeuroethicsPerspectives in Neuroethics. Cambridge University Press, . Cambridge University Press, Cambridge, 2010.Cambridge, 2010.
Giordano J, Benedikter R. The future of humanity: Giordano J, Benedikter R. The future of humanity: Biotechnology and trans- and post-human possibilities. Biotechnology and trans- and post-human possibilities. J J Futures StudiesFutures Studies 6:6: 55-78 (2010) 6:6: 55-78 (2010)
Giordano J. The mechanistic paradox: Science, technology, Giordano J. The mechanistic paradox: Science, technology, ethics and policy in relation. ethics and policy in relation. SynesisSynesis 2010 1(1): G1-4. 2010 1(1): G1-4.
Haller MH.Haller MH. Eugenics Eugenics. Rutgers University Press, NJ, 1984.. Rutgers University Press, NJ, 1984. Patil T, Giordano J. On the ontological assumptions of the Patil T, Giordano J. On the ontological assumptions of the
medical model of psychiatry. medical model of psychiatry. Phil Ethics Hum MedPhil Ethics Hum Med 2010; 2010; 5(3).5(3).
AcknowledgementsAcknowledgements
Supported in part by the Nour Supported in part by the Nour Foundation; Institute for Foundation; Institute for BioTechnology Futures; The William BioTechnology Futures; The William H. and Sara Crane Schaefer H. and Sara Crane Schaefer Endowment of Gallaudet University; Endowment of Gallaudet University; and the Potomac Institute for Policy and the Potomac Institute for Policy StudiesStudies
Thanks to Sherry Loveless for graphic Thanks to Sherry Loveless for graphic artistryartistry
Discourse, Dialectic…Discourse, Dialectic…ExpressionExpression
International Ethics International Ethics consortiumconsortiumGallaudet UniversityGallaudet University
Georgetown UniversityGeorgetown University
University of MichiganUniversity of Michigan
University of MississippiUniversity of Mississippi
US Naval Medical InstituteUS Naval Medical Institute
University of Bristol, UKUniversity of Bristol, UK
University of BotswanaUniversity of Botswana
University of Texas, SouthwesternUniversity of Texas, Southwestern
University of Texas, Health Sciences CenterUniversity of Texas, Health Sciences Center
International Ethics International Ethics consortiumconsortium
“…“…An international consortium An international consortium promoting knowledge and intellectual promoting knowledge and intellectual capacity sharing, educational capacity sharing, educational development, and diverse scholar and development, and diverse scholar and research opportunities regarding research opportunities regarding ethics and science, diverse forms if ethics and science, diverse forms if healthcare and human services, the healthcare and human services, the humanities and the arts, and all humanities and the arts, and all research disciplines across research disciplines across multicultural and global multicultural and global perspectives.”perspectives.”
Participatory EngagementParticipatory Engagement
www.EthicShare.orgwww.EthicShare.orgUniversity of MichiganUniversity of Michigan
Bioethics community resource developed through partnership Bioethics community resource developed through partnership with University of Minnesota, Indiana University, with University of Minnesota, Indiana University,
Georgetown University, Stanford University, University of Georgetown University, Stanford University, University of Virginia and Mississippi State University. Virginia and Mississippi State University.
Supported by the Andrew W. Mellon Foundation, Council on Supported by the Andrew W. Mellon Foundation, Council on Library and Information Resources, National Science Library and Information Resources, National Science
Foundation, and University of Minnesota. Foundation, and University of Minnesota.
Resources on EthicShare provided through partnerships with Resources on EthicShare provided through partnerships with National Reference Center for Bioethics Literature at National Reference Center for Bioethics Literature at
Georgetown University, the National Library of Medicine, Georgetown University, the National Library of Medicine, and OCLC WorldCat database. and OCLC WorldCat database.
Expression and Expression and Exchange of IdeasExchange of Ideas
……an open invitationan open invitation