This is remarkable not just as an example of scientific design and theory. It’s also one of the best early examples of what is known as “informed consent”. This is the document that those fourteen men signed. It explains to them the risks of their choices. Informed consent is a beautiful idea, an invention that we can be proud of as a society. It means that a participant in a medical study should understand the consequences, the risks and the benefits, of joining a study before making a choice. It’s the idea that agreement without understanding is not really agreement. It’s the idea that we should willingly enter experiments as humans. 2:30
It’s a tragedy. This side effect of informed consent - really of privacy as we’ve built it in an analog world - means that for the vast majority of the data we create, only a tiny number of people ever see it. Only a tiny number of people can ever have an idea, much less lots of ideas. We created this power to protect ourselves from harm, but the disconnect between this power and new technologies means the power of consent can act as a drag on knowledge and discovery.
The way we get informed consent most of the time is that we ask for it in the context of a specific study. So, in a clinical trial about prostate cancer, we ask for permission to gather data about prostate cancer, and we promise never to share it with anyone. This was done to protect participants from potential harms – to protect us. It was essential for the era of the traditional clinical trial…but we need more than that now. And it means the data for every clinical trial, over and over, go into silos. They can’t be integrated. They can’t be networked. They can’t generate spontaneous innovation. They simply rot away. The legal tool intended to protect us is actually creating a barrier to discovery, to cures.4:42
1. code for americasummer code party23 june 2012 john wilbanks @wilbanks
2. if government = platform then science = wiki why not extend?
3. if government = platform then science = wiki why not extend?
4. for every $100,000 invested .6 to 5 papers published.
5. for every $100,000 invested .6 to 5 papers published. all credit to @researchremix
6. a terribly inefficient wiki.
7. 1. open content
8. since no publisher has presented adverse event data why not extend?
9. “data and analytics to enableits customers to evaluate andmanage risks associated with transactions”
10. since no publisher has presented adverse event data why not extend?
11. on FRPAA:“It would also compel Americantaxpayers to subsidize the acquisitionof important research information byforeign governments andcorporations that compete inglobal markets with the public andprivate scientific enterprises conductedin the United States.” (american association of publishers)
12. foreign governments can affordsubscriptions if they want them.
13. no change in outcome without change in stakeholders.
14. WE PETITION THE OBAMA ADMINISTRATION TO:Require free, timely access over the Internet to journal articlesarising from taxpayer-funded research.We believe in the power of the Internet to fosterinnovation, research, and education. Requiring the publishedresults of taxpayer-funded research to be posted on the Internetin human and machine readable form would provide access topatients and caregivers, students and theirteachers, researchers, entrepreneurs, and other taxpayers whopaid for the research. Expanding access would speed theresearch process and increase the return on our investment inscientific research.The highly successful Public Access Policy of the NationalInstitutes of Health proves that this can be done withoutdisrupting the research process, and we urge President Obamato act now to implement open access policies for all federalagencies that fund scientific research.
15. thanks @sennoma, @mrgunn, and more!
16. 2. open data
17. “raw data now”
18. gathered independently, for different reasons...
19. “raw metadata and standardsprocesses, and consensusprocesses, and document submissionstandards, and archives”
21. existential questions about data…
22. 3. open consent
23. data collected 1994-962695 participantsgrant cost $85 per person THREESCENARIOS
24. data used to be really hard toget.
25. 5 months ~ 7,680,000 ratings ~ 500,000 meals 50 countries no grant no IRB no academicsTHREE SCENARIOS
26. [at least some] people really like toshare as their form of controlTHREE SCENARIOS
27. THE UNINTENDEDCONSEQUENCES OF INFORMEDCONSENT
28. PORTABLE CONSENT TODONATE YOUR DATA TOSCIENCETHREE SCENARIOS
29. terms in blue pop up to definitions
30. all boxes must be checked volunteer must click to proceed
31. volunteer cannot skip video
32. data types:1. genome2. medical / health records3. lifestyle4. laboratory (connect via GUID)
33. Public Portable Legal Sage Bionetworks Sage Bionetworks Recruitment Consent CGRE Synapse Foundation Advocacy CGRE Database Synapse Database Portable Legal Consent Individual Level De-identified 1 2 3 Data 4 Dataset 5 Hospital Researcher Foundation AdvocacyParticipants