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