copyright institute for ethics and emerging technologies 2005 democracy, citizenship and universal...

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

[email protected]


HumanUpgrades.com


HumanUpgrades: Simplicity


HumanUpgrades: SimpleNose


SimpleNose


Human Upgrades: SimpleEar


SimpleEar


HumanUpgrades: SimpleTooth


Simpletooth


Lust


HumanUpgrades: HighTech


Cooling Vents


HumanUpgrade: Victory


Sixth Finger


Webbed Fingers


DNA Surgery


Facilities


Contacting HumanUpgrades


Certificates


Unlocking Human Enhancement

Why we want human enhancement technologies

Slowing aging Controlling obesity Enhancing memory,

cognition Boosting happiness

set-points Personal aesthetic choices


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


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


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


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


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


Countervailing Influence

Science Policy

Citizen Lobbies

Industry Experts


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


2. Facilitate Innovation

Support funding of HET research initiativesEmbryonic stem cell

research fundingNBICNeural prostheticsHuman Cognos

Project


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


Antiaging Program to Secure “Longevity Dividend”

Manhattan project on anti-aging

Olshansky’s about-face:


Regulate for Safety & Efficacy, Not Morals and Angst

No to more HFEAsYes to stronger

and more independent FDA and European Medicines Evaluation Agency


Bush Calls for Ban on Cloning, Transgenic Research


Defend Transgenics

Race-mixing hysteria Primate shortage: Replace

primates with transgenics in clinical research


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


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


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


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


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


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


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)


Data Censoring by Investigators

The aggregation of experimental outcomes by health systems Assure

completeness of result reporting

Could still protect proprietary information


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


Home Health Monitoring

Telemedicine Wireless devices, linked

to health system Blood Pressure Monitors Glucometers Peak Flow Meters Pulse Oximeters Weight Scale


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


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


Universal Access

Defend universal health care systems

Expand access in the developing worldAnti-retroviral drugsTRIPSGlobal FundWHO


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


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


Genetic Self-Ownership

No IP restrictions on use of own genetic code, even if designed


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


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


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


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.”


For more information

Institute for Ethics and Emerging Technologiesieet.org

Me: [email protected]

copyright institute for ethics and emerging technologies 2005 democracy, citizenship and universal...

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