From Health IT News:
Deborah Peel, founder and chairman of Patient Privacy Rights, takes exception to a plan by Mountain View, Calif. -based Perlegen Sciences, Inc. to collaborate with an undisclosed electronic medical records vendor to identify and develop genetic markers that predict how patients are likely to respond to specific medical treatments.
The New Tuskegee
An EMR vendor (whose name is kept secret) profits from secret access to Americans’ health information and the patients don’t know their health information has been data mined or their genetic samples were used until they get paid. They still might not know even then why they got a check.
“Consent” for getting genetic test data is ONLY obtained from the provider, NOT the patient, via “HIPAA and IRBs” – both of which totally bypass the patient. HIPAA allows unfettered use of PHI by covered entities – in total defiance of medical ethics and strong laws in every state which prohibit the use of PHI without consent. HIPAA was gutted by industry appointees to HHS in 2002 and the right of consent was eliminated.
There is no consent from patients up front to have their records data-mined or their DNA samples taken by Perlegen.
Full Commentary – Healthcare IT News