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Copyright Institute for Ethics and Emerging Technologies 2005 Democracy, Citizenship and Universal Access to Safe Enhancement James J. Hughes Ph.D. Executive Director, World Transhumanist Association & Institute for Ethics and Emerging Technologies Public Policy Studies, Trinity College, Hartford CT James.Hughes@trincoll.edu
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Copyright Institute for Ethics and Emerging Technologies 2005 HumanUpgrades.com
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Copyright Institute for Ethics and Emerging Technologies 2005 HumanUpgrades: Simplicity
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Copyright Institute for Ethics and Emerging Technologies 2005 HumanUpgrades: SimpleNose
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Copyright Institute for Ethics and Emerging Technologies 2005 SimpleNose
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Copyright Institute for Ethics and Emerging Technologies 2005 Human Upgrades: SimpleEar
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Copyright Institute for Ethics and Emerging Technologies 2005 SimpleEar
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Copyright Institute for Ethics and Emerging Technologies 2005 HumanUpgrades: SimpleTooth
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Copyright Institute for Ethics and Emerging Technologies 2005 Simpletooth
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Copyright Institute for Ethics and Emerging Technologies 2005 Lust
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Copyright Institute for Ethics and Emerging Technologies 2005 HumanUpgrades: HighTech
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Copyright Institute for Ethics and Emerging Technologies 2005 Cooling Vents
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Copyright Institute for Ethics and Emerging Technologies 2005 Cooling Vents
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Copyright Institute for Ethics and Emerging Technologies 2005 HumanUpgrade: Victory
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Copyright Institute for Ethics and Emerging Technologies 2005 Sixth Finger
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Copyright Institute for Ethics and Emerging Technologies 2005 Sixth Finger
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Copyright Institute for Ethics and Emerging Technologies 2005 Webbed Fingers
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Copyright Institute for Ethics and Emerging Technologies 2005 DNA Surgery
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Copyright Institute for Ethics and Emerging Technologies 2005 Facilities
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Copyright Institute for Ethics and Emerging Technologies 2005 Contacting HumanUpgrades
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Copyright Institute for Ethics and Emerging Technologies 2005 Certificates
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Copyright Institute for Ethics and Emerging Technologies 2005 Unlocking Human Enhancement Why we want human enhancement technologies Slowing aging Controlling obesity Enhancing memory, cognition Boosting happiness set-points Personal aesthetic choices
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Copyright Institute for Ethics and Emerging Technologies 2005 Emerging HETs Tech that will radically change human life: Plastic surgery Psychopharmaceuticals Gene therapy Implanted/wearable devices Nanomedical applications The accelerating convergence of all these
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Copyright Institute for Ethics and Emerging Technologies 2005 Obstacles to Development 1. Fundamental disagreements about “the natural” and “the human” 2. Pragmatic concerns about safety, access and effects on society 3. Existing institutional constraints on their development The latter two can be addressed
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Copyright Institute for Ethics and Emerging Technologies 2005 Enhancement Agenda Cultural Political Regulatory Innovation Safety Promote technological citizenship Facilitate HET innovation AccessEstablish rights of the person to tech empowerment Promote access to HETs
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Copyright Institute for Ethics and Emerging Technologies 2005 1. Promote Technocitizenship Political opening for strengthening math, science & eng ed NAS report on sci-tech education Bush proposal on sci-tech education Familiarity with sci-tech reduces technophobia Help students, NGOs, parties, journalists learn about benefits of research, and engage informedly and constructively with HET issues Tech-familiar citizens are less Luddite, and more competitive
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Copyright Institute for Ethics and Emerging Technologies 2005 Pro-Science Citizen Lobbies Mobilized citizens can be allies of science policy Disease lobbies JDRF, ACT-UP Stem cell research lobby groups State stem cell funding campaigns Consumer protection groups Critiquing politicized science policy Mainstream environmental groups Bush admin’s war on science
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Copyright Institute for Ethics and Emerging Technologies 2005 Countervailing Influence Science Policy Citizen Lobbies Industry Experts
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Copyright Institute for Ethics and Emerging Technologies 2005 Defend State Role of Expertise Mooney The Republican War on Science Citizen and industry influence in science policy needs balance from independent, non-partisan experts Bush admin litmus tests for health and climate science bodies Relegitimate expertise by ensuring independence
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Copyright Institute for Ethics and Emerging Technologies 2005 2. Facilitate Innovation Support funding of HET research initiatives Embryonic stem cell research funding NBIC Neural prosthetics Human Cognos Project
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Copyright Institute for Ethics and Emerging Technologies 2005 NSF: Nanowiring the Brain “Neuro-vascular central nervous recording/stimulating system: Using nanotechnology probes,” Rodolfo R. Llinás, Kerry D. Walton, Masayuki Nakao, et al. “The emergence and policy implications of converging new technologies integrated from the nanoscale,” M. C. Roco
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Copyright Institute for Ethics and Emerging Technologies 2005 Antiaging Program to Secure “Longevity Dividend” Manhattan project on anti-aging Olshansky’s about-face:
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Copyright Institute for Ethics and Emerging Technologies 2005 Regulate for Safety & Efficacy, Not Morals and Angst No to more HFEAs Yes to stronger and more independent FDA and European Medicines Evaluation Agency
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Copyright Institute for Ethics and Emerging Technologies 2005 Bush Calls for Ban on Cloning, Transgenic Research
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Copyright Institute for Ethics and Emerging Technologies 2005 Defend Transgenics Race-mixing hysteria Primate shortage: Replace primates with transgenics in clinical research
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Copyright Institute for Ethics and Emerging Technologies 2005 In Silico Discovery and Trials Speed discovery and clinical trials by relying more on Computational chemistry discovery process Computer models of body systems and disease Mining of genomic, epidemiological data In silico clinical trials
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Copyright Institute for Ethics and Emerging Technologies 2005 Cognos and Brain Modeling Modeling brain systems and cognitive processes will allow rapid testing of cognitive enhancements Blue Brain Project (IBM, Swiss) Cognos Project Finetuning of evolving exocerebrum against models of the neocortex
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Copyright Institute for Ethics and Emerging Technologies 2005 Restrict IP Over-reach 1/5 of human genome is patented Gene patent glut restricts gene product innovation Ideally, EU etc. ignores gene patents, promotes open source model Tighter restrictions of patentability USPTO/global patent pools
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Copyright Institute for Ethics and Emerging Technologies 2005 International Harmonization Harmonization of regulation within the OECD countries can be both restrictive and liberalizing But overall it will speed innovation Speed up the process and implementation of the International Conference on Harmonization
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Copyright Institute for Ethics and Emerging Technologies 2005 3. Promote Access to HET 1. Move beyond clinical trials To liberalized access to experimental drugs and devices With data aggregation through distributed medical monitoring 2. Protect universal healthcare Expand access in the developing world
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Copyright Institute for Ethics and Emerging Technologies 2005 Beyond Clinical Trials Too slow, expensive and small Don’t respect rights to use experimental substances Randomized trials violate clinical ethics equipoise CTs control too much – don’t measure the variety of compliance
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Copyright Institute for Ethics and Emerging Technologies 2005 The Value of Large Obs Studies Framingham Heart Study 1948-1980 (N=5200) Nurses Health Study1976- 1992 (N=121,700) NHANES I 1971-1992 (N=32,000) NHANES II 1976-1980 (N=26,000) NHANES III 1988-1994 (34,000) Women’s Health Initiative 1991- 2006 (N=93,676)
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Copyright Institute for Ethics and Emerging Technologies 2005 Data Censoring by Investigators The aggregation of experimental outcomes by health systems Assure completeness of result reporting Could still protect proprietary information
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Copyright Institute for Ethics and Emerging Technologies 2005 Biomonitoring with Epi/Biotatistics Allow liberal access to experimental substances With patient education and advice as to use Home biomonitoring based on current trends Large-scale data aggregation and analysis Expand on existing adverse event and Stage 4 reporting
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Copyright Institute for Ethics and Emerging Technologies 2005 Home Health Monitoring Telemedicine Wireless devices, linked to health system Blood Pressure Monitors Glucometers Peak Flow Meters Pulse Oximeters Weight Scale
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Copyright Institute for Ethics and Emerging Technologies 2005 Permits Constant Feedback An observational model of safety testing would permit ongoing feedback of data to clinicians and patients, and ongoing tweaking of treatment regimes Part public health monitoring for emerging diseases
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Copyright Institute for Ethics and Emerging Technologies 2005 Beyond Therapy/Enhancement Priority-setting in research and coverage Use same cost-effectiveness criteria for therapies and enhancements to determine inclusion in health plans QALYs, QWBs Aging retardation treatment of aging-related diseases Intelligence enhancement cures for retardation, brain injury and dementia Treatment of depression hypothymic medication
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Copyright Institute for Ethics and Emerging Technologies 2005 Universal Access Defend universal health care systems Expand access in the developing world Anti-retroviral drugs TRIPS Global Fund WHO
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Copyright Institute for Ethics and Emerging Technologies 2005 4. Establish Rights of the Person 1. Bodily autonomy, reproductive rights and cognitive liberty as first principles 2. Genetic self-ownership 3. Technological self-determination 4. Reform of laws to reflect personhood not humanness as the basis of rights-bearing
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Copyright Institute for Ethics and Emerging Technologies 2005 Autonomy Rights as a Start The anti-enhancement community usually starts the discussion with risks and philosophical angst By starting with strong autonomy rights the state needs to meet a high bar to ban an enhancement Sen/Capability Approach: Faciliating full autonomy is necessary for equality
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Copyright Institute for Ethics and Emerging Technologies 2005 Genetic Self-Ownership No IP restrictions on use of own genetic code, even if designed
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Copyright Institute for Ethics and Emerging Technologies 2005 Technological Self-Determination The right to use technology to control our own bodies and minds The right to more life & ability Health care access Cognitive liberty Transgender rights Rights to body modification and cosmetic enhancement Reproductive rights Rights of disabled to assistive tech
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Copyright Institute for Ethics and Emerging Technologies 2005 Constituencies for HET Disabled seeking assistive tech and cures Feminists supporting full reproductive rights including germinal choice Drug law reform advocates supporting deregulated access to neurotechnologies Scientists & health workers alienated by religious right and Republican restrictions on science
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Copyright Institute for Ethics and Emerging Technologies 2005 More HET Constituencies LGBT community seeking reproductive options Tech-friendly ecologists supporting tech solutions to eco-threats Senior citizens looking for cures for aging-related diseases Developing countries hoping to use emerging technologies to “leapfrog” to development
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Copyright Institute for Ethics and Emerging Technologies 2005 More HET Constituencies Animal rights activists advocating a post-speciesist basis for rights Mark Greene et al. “Moral Issues of Human-Non-Human Primate Neural Grafting” Science 15 July 2005: “…it might even be argued that such changes constitute a potential benefit to the engrafted animal, insofar as the changes are viewed as enhancements of the sort we value for ourselves.”
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Copyright Institute for Ethics and Emerging Technologies 2005 For more information Institute for Ethics and Emerging Technologies ieet.org Me: james.hughes@trincoll.edu james.hughes@trincoll.edu
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