Slides from the NCI DCLG meeting March 18 2013. Agenda at http://advocacy.cancer.gov/files/DCLG_Meeting_62_Public_Agenda.pdf

1. 1.
sharing by small but
coherent groups can
create asymmetrically
valuable resources.

2. small group
sharing

3. coherentism from:
standard legal tools
common infrastructure
norms
metadata

4. (doesn’t exist for personal
health data)

7. http://opensnp.org/users/615

8. http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html

9. “Also there is no suggestion of
consanguinity in your pedigree.”
http://www.ianlogan.co.uk/

10. 2.
the experiment:

11. let’s build a small but
coherent group to
share data and see if it
works in health.

12. PLC:
“portable” legal consent

14. terms in blue pop up definitions

16. all boxes must be checked
volunteer must click to proceed

17. volunteer cannot skip video

21. 21

22. 22

23. 23

24. 24

25. 3.
success will not magically
increase thanks to data.

26. 26

27. assume 1,000,000 downloads
assume 10% false positive rate
100,000 doctor visits
$1000 per biopsy

29. thank you
@wilbanks
john.wilbanks@sagebase.org