Engagement from the Trenches & Benches

Transcription

1 Engagement from the Trenches & Benches Individuals and participation in research: sharing, controlling, collaborating Greg Biggers

2 Network of over 10,000 organizations 1200 advocacy organizations Devoted to improving health through collaboration, organizational culture, and openness

3 Gene Discovery BioBank Testing Clinical Diagnostic Test Development via FDA & CLIA Regulatory Strategies Licensing & Intellectual Property Management Human Clinical Trials Drug Screening & Development Approaches Therapeutics Small Molecules Nonsense mutants

4 Because success will depend on earning the public s trust, scientists must also trust the public.

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7 Genetic Alliance Registry & BioBank Tissue samples + clinical records Cross-Disease Trust Community Based on Local (Global) Community Trusted Agent BioBank.org

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9 n = they n = me n = we

10 y ten participants have been erested parties must first pass hat gauges comprehension of ly disclosing ter which ir genomes hare details phenotypic including zations, diet nds of fullto various romises to to diagnose, nt illness, t, he adds, sal to create prospective, rimentation and maybe e than the s. e website hile, helps people extract from their gene scans than genomics focused blog Gene that Genomera s model is democratic. 23andMe s mo to some exte company is makes the 70 The locus of control is different and distributed. Greg Biggers PHOTOGRAPHY: GREGG SEGAL FEATURES 084 Cover story You are never alone which proj pursuing, h providers, su California b which is p academic ce using per testing as a discovery t even 102 less par Welcome to Genomera, Hackerville says, the be different, will decide pursuing. 108 Secrets of my Biggers DNA ec With Genom locus of con and distributed. 116There a investigators and subjects. I Greg Biggers Our online lives are transforming our expectations of what s public and what s personal in the digital age. Andrew Keen, Steven Johnson and Jeff Jarvis share their thoughts on privacy 094 Cover story The red market Is the human body sacred? Or is it a commodity ready to be chopped up and exposed to the forces of supply and demand? WIRED goes inside the business of human body parts WIRED visits Râmnicu Vâlcea AKA Hackerville to investigate why this remote town in Romania has become a world-renowned centre for creating cybercriminals Raymond McCauley is betting on cheap gene tests plus some amateur science to reduce his risk of going blind. Who needs doctors in the new era of health hacking? Nuclear island After the second world war, Argentina hired German émigré scientists to build a top-secret mega lab in the middle of a Patagonian lake. Their project was supposed to change the world 122 Cover story The card master Max Butler, a $100-an-hour onlinesecurity expert, had an alter ego: Iceman. Using this identity, Butler crowned himself king of a global online fraud network 108 CONTENTS03 11 Raymond McCauley, the citizen scientist using a map of his DNA to tailor-make his healthcare

11 Health Studies Beta

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13 Enlarging Patient Roles Unwitting subject Willing subject Participant Collaborator Shareholder In the 90s, patients were occasionally invited to the table. Today, we often Who is scientist? control the table.

14 What do we want (have)? CONTROL (of tissue, data, intent, outcomes) Communities of TRUST (consent > governance) ENGAGEMENT (bi-di communication, new roles) IMPACT (what is at stake?) SHAREHOLDERS (in stakes & benefits) EXPRESS rights in addition to protecting

15 You never change things by fighting existing reality. To change something, build a new model that makes the existing model obsolete. Buckminster Fuller

16 The best way to predict the future is to invent it Alan Kay

17 The future is already here. It s just not evenly distributed yet William Gibson

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19 Appendix

20 DNA Warehousing Newborn Screening

21 DNA Warehousing Newborn Screening "We were appalled when we found out. Why do they need to store my baby's DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance. Karen Brown, Nurse, new mother, Florida February 4, 2010

22 It is the moral imperative of every DNA Warehousing Newborn Screening person on the planet to freely share their health information. Paraphrase of Jamie Heywood, Co-founder, Patients Like Me "We were appalled when we found out. Why do they need to store my baby's DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance. Karen Brown, Nurse, new mother, Florida February 4, 2010