The MOST “incomplete” US privacy law is HIPAA, which eliminated Americans’ rights to control the collection, use, disclosure and sale of their health data in 2001.
The new Omnibus Privacy Rule did not fix this disaster. It made things worse by explicitly permitting health data sales for virtually any purpose without patients’ consent or knowledge. These new regulations violate Congress’ intent to ban the sale of health data in the 2009 stimulus bill.
In addition to not being able to control personal health information Americans have no ‘chain of custody’ for their health data, so there is no way to know who is using or selling our health data.
- -Watch ABC TV 3 minute video that shows diabetic patients records being sold online for $14-$25 each:http://abcnews.go.com/Health/medical-records-private-abc-news-investigation/story?id=17228986&singlePage=true#.UFKTXVHUF-Y
We need a data map to track all the hidden users and sellers of our personal health information, from our DNA, to our diagnoses, to our prescription records:
- -Watch Professor Sweeney describe the Harvard Data Privacy Lab/Patient Privacy Rights research project to track hidden users of our health data at: http://patientprivacyrights.org/thedatamap/
- -WE NEED A DATA MAP TO SHOW THE GOVERNMENT IT’S TIME TO FIX THIS PRIVACY DISASTER!
Attend or watch the next health privacy summit June 5-6 in Washington, DC to learn about these urgent health data problems and potential solutions:
- -Peter Hustinx, the EU Data Protection Supervisor and Todd Park, the US Chief Technology Officer, will give keynote speeches
- -Register to attend or watch (free) at: http://www.healthprivacysummit.org/events/2013-health-privacy-summit/event-summary-1bfa9be80d364092aeed1a8803377fa8.aspx