copyright institute for ethics and emerging technologies 2005 democracy, citizenship and universal...
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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
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HumanUpgrades.com
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HumanUpgrades: Simplicity
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HumanUpgrades: SimpleNose
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SimpleNose
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Human Upgrades: SimpleEar
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SimpleEar
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HumanUpgrades: SimpleTooth
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Simpletooth
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Lust
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HumanUpgrades: HighTech
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Cooling Vents
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Cooling Vents
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HumanUpgrade: Victory
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Sixth Finger
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Sixth Finger
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Webbed Fingers
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DNA Surgery
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Facilities
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Contacting HumanUpgrades
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Certificates
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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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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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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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Enhancement Agenda
Cultural
Political
Regulatory
Innovation
Safety
Promote technological citizenship
Facilitate HET innovation
Access Establish rights of the person to tech empowerment
Promote access to HETs
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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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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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Countervailing Influence
Science Policy
Citizen Lobbies
Industry Experts
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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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2. Facilitate Innovation
Support funding of HET research initiativesEmbryonic stem cell
research fundingNBICNeural prostheticsHuman Cognos
Project
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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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Antiaging Program to Secure “Longevity Dividend”
Manhattan project on anti-aging
Olshansky’s about-face:
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Regulate for Safety & Efficacy, Not Morals and Angst
No to more HFEAsYes to stronger
and more independent FDA and European Medicines Evaluation Agency
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Bush Calls for Ban on Cloning, Transgenic Research
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Defend Transgenics
Race-mixing hysteria Primate shortage: Replace
primates with transgenics in clinical research
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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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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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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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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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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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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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The Value of Large Obs Studies
Framingham Heart Study 1948-1980 (N=5200)
Nurses Health Study 1976-1992 (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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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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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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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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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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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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Universal Access
Defend universal health care systems
Expand access in the developing worldAnti-retroviral drugsTRIPSGlobal FundWHO
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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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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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Genetic Self-Ownership
No IP restrictions on use of own genetic code, even if designed
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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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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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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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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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For more information
Institute for Ethics and Emerging Technologiesieet.org