“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.
In fact - if you read this story carefully, patients may never know (even later on) that their genetic samples were taken or used or that their health records were data-mined and sold to Perlegen by the EMR vendor.
This is the new Tuskegee - forced research participation without informed consent or even notice.
The doctors are contacted when a candidate for genetic tests is identified by Perlegen and then are COMPENSATED after re-identification of patient records and genetic samples! There is no evidence provided to prove that the data is “de-identified” or in what way re-identification occurs without consent. There is no way to determine how secure the data is in Perlegen’s data banks, and there is no way to know to whom Perlegen will sell patient data or results.