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James Giordano, PhD, MPhil. Center for Neurotechnology Studies

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

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James Giordano, PhD, MPhil. Center for Neurotechnology Studies

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  1. Diversity as Normalcy:Research, Ethics and Social Responsibility- Implications for Educationand 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

  2. Core Premise • 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

  3. 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

  4. Systems’-based Expression Biological traits and characteristics are expressed as an interactive function of Genotype +/- Environment  Phenotype +/- Environment Spectrum of phenotypic expression(s)

  5. Internal External GENOTYPE ENDO- PHENOTYPES EXO- PHENOTYPES Environment Environment Structure Function ORGANISM Perceptions/Cognitions Behaviors Somatic State Sensations EFFECTS Nature-via-Nurture

  6. Manifest Characteristics Decisional (practical) Threshold Spectrum Expression(s) =(Genotype + Phenotype) +/- Environment Spectrum Effect(s)

  7. Individual and Group Variation Genetic predisposition Extant phenotype(s) Epigenetic factors Psychosocial reciprocity

  8. Biological “Norms” • 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’

  9. Culture • “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

  10. Human “Nature”, Hearing, Deafness What “nature”? Doctrinal? Statistical? Constructivist? What norm? Biological? Psychological? Social?

  11. Ontology vs Operation Entity vs Effectuation What we “Are” vs How we “Act” Being vs Doing What is the Relation?

  12. Scientific PerspectivesOntology 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…

  13. 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)

  14. Consistency with Philosophical Tasks • 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

  15. The “Ethical Turn”:What is the “Good”? How do these constructs impact scope and nature… • Technologic applications • Research 3. Clinical medicine 4. Philosophical precepts (“bio-ontologies”) 5. Ethics 6. Daily life - individually, communally

  16. Good Entails Right “Recta ratio speculabilium; recta ratio agibilium” Aquinas • Right use of knowledge critical to “good” use in application(s) • Caveat against: • Misinterpretation • “Cherry picking” • Inapt use • Frank misuse

  17. Lessons from History Galton Pearson von Verschuer

  18. 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

  19. Lessons Learned? Have We Considered Premises and Implications… AB 2702 (USA)? Human Fertilisation and Embryology Act (UK)?

  20. Implicit/Explicit Ontological Assertions Name Instantiation of Identity Frame Identification of Commonality Claim Commonality of Stature, Status, Treatment

  21. 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

  22. 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)

  23. 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).

  24. 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.

  25. Toward a “Fix” • 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 non-use (i.e.- Homo faber)

  26. Instantiations and Applications • Research: • What is studied? • How it is studied? • By whom? • For whom? • To what end(s)?

  27. 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

  28. Instantiations and Applications • Practice(s) • Healthcare • As the “…most human of the sciences and most scientific of the humanities” • Social sciences • Toward initiating the discourse in history, anthropology and sociology • Humanities • Philosophical premises and dialectics • Depiction and exploration in the arts • Public life • Philosophy as historical discourse; ethics as human ecology • Policy and law Each and all require educational address and explication

  29. Keeping Ethics In-STEP with Scientific Progress • Integration of Science, Technology, Ethics and Policy in • Research • Education • Practice As an Educational and Practical Paradigm In the Arendtian Spirit

  30. 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.

  31. Selected Bibliography • 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).

  32. Acknowledgements • 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

  33. 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

  34. International Ethics consortium “…An international consortium promoting knowledge and intellectual capacity sharing, educational development, and diverse scholar and research opportunities regarding ethics and science, diverse forms if healthcare and human services, the humanities and the arts, and all research disciplines across multicultural and global perspectives.”

  35. Participatory Engagement www.EthicShare.org University of Michigan Bioethics community resource developed through partnership with University of Minnesota, Indiana University, Georgetown University, Stanford University, University of Virginia and Mississippi State University. Supported by the Andrew W. Mellon Foundation, Council on Library and Information Resources, National Science Foundation, and University of Minnesota. Resources on EthicShare provided through partnerships with National Reference Center for Bioethics Literature at Georgetown University, the National Library of Medicine, and OCLC WorldCat database.

  36. Expression and Exchange of Ideas …an open invitation

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