David ewing duncan open science 7-30-10

Open Science Meets Personalized Health

David Ewing DuncanDirector, Center for Life

Science Policy, UC Berkeley

Two Great Movements

Citizen scientists

Citizen patients

Historical Moment

People

+ Technology

= Empowerment

“With great power comes great responsibility...”

- Ben Parker (Spiderman’s Uncle)

Why DIY?oCuriosity

oFeel it coming: early adopters

oOutmoded paradigms

oTired of hearing no

oBad customer service

oChange the world

THE EXPERIMENTAL MAN PROJECT

Age of Personalized Health

o10 million genetic markers

o9,366 genotypes

o 320 environmental toxins

o 22 hours of MRI brain scans

o ~ 2 liters of blood

o ~ $150,000

The Experiment

Healthy

Not Just Genes...

Environment

BrainBody

Experimental Family

Alzheimer’s (rs4420638)

Father Mother AG

AA

David Brother AA AG

Daughter AA

Heart Attack (rs1075728)

Father Mother AG AG

David Brother GG AA

Daughter AG

Favorite Genetic Marker

CYP1A2Caffeine Fast Metabolizer

Mercury and Me

Mercury and Me

Halibut (lunch) Swordfish (dinner)

Mercury and Me

Mercury Before: 4 ppb

Mercury After: 13 ppb

Chemical Gene Name

My Results

Impact/Disease

Methyl Mercury (MeHg)

GSTP1-125 AA > Risk of asthma, adverse drug response, cancers

MeHg GSTP1-114 CC > Risk of some cancers

Hg CPOX4 AC > Neurotoxic effects

Hg BDNF GG > Effects on cognition, mood, motor function

Hg COMT AA > Effects on confusion, coordination

My genetic sensitivity to mercury(Envirogenomics)

High Anxiety

Emotional incongruence (emotional conflict)

Emotional conflict resolution(emotion regulation)

Fear and Anxiety

(Don’t) Be Still My Beating Heart

Copyright 2008 Entelos, Inc.

First Add Genomics

Copyright 2008 Entelos, Inc.

Biomarkers (Chemistry)

Copyright 2008 Entelos, Inc.

Scans: Ultrasound and CT

Combine Risk Factors

Genes + Environment +Biomarkers + Ultrasound + CT Scan

Entelos Project

Copyright 2008 Entelos, Inc.

Prediction of my future… ?

Lost 10 pounds

oScience needs validatingoSkeptical public oResistance from traditional

medicineoExpensiveoShift from old to new

Still work to be done

Orwellian Possibilities

o Big Brother

o The Obama Effect

oDiscrimination

oGenetic thrallism (Gattaca)

oUnleashing monsters

o Fear

Personalized Health Project

o Coordinated effort to validateo Integration is keyo Get creative with law, policy,

education, ethics, mediao Private sector and early adopters o Encourage (demand?) a paradigm shift

Thoughts on DIY

o Dangers need to be taken seriously (credo of Ben Parker)

o Be proactive with government and law enforcement

o Work with Big Science – they need you, you need them

o Do something wonderful

Coming this fall…

The Linkage Project:A Manifesto

Still going… more tests

www.ExperimentalMan.com