control over informationhuman dignityintimacyrestricted accessharm preventionexploitationdiscrimination
1. consenting to researchpresentation to the Presidential Commission for the Study of Bioethical Issues San Francisco, CA USA 2/2/2012
2. “Privacy is about context, socialsituations, and control.” - danah boyd
3. 1. We are going to get our [genetic,health] data, one way or another.
4. but we often lack agency to decide what is done with data about us…
5. (we are also going to talk about it)
6. in the future, anyone who wants acopy of your genome will probably beable to get it.
7. 2. data > information > knowledge > wisdom
8. how do we ensure our data getsturned into knowledge?
9. 3. the infrastructure is just emerging.
10. “technology doesn’t support patient engagement”
11. my wish list• Remove uncertainty, create incentives, training• Safe harbor for IRB-approved experimentation with new models for consent (i.e. portable, fully identified, etc)• Clear guidelines that harm lies in the act of reidentification, not act of distributing data with risk of reidentification (as long as done under safe harbor with consent)• Matching grants for infrastructure (inarguable role for government)