My question involves public health law in the State of: CA
By the books, HIPAA allows for an entity to use or release personal health information (PHI) for the purpose of research without individual consent based on the decision of an Institutional Review Board's decision that authorization is not needed,
Do I have the right to request that my PHI not be released for research purposes? By all intents and purposes, the IRB and researcher must take the necessary steps to protect the individual's identity, privacy, confidentiality.
I just received a letter from my HMO requesting that I participate in a research study based on the fact that I have been diagnosed with "illness A". This request came via general USPS courier and fully disclosed the illness and my identity. No attempt was made to protect my rightful expectation of provider/client confidentiality.
I am pursuing a career in a field where the stigma of Illness A could inhibit admission to grad school, internships and employment. By law it isn't legal to discriminate based on Illness A but one cannot eliminate stigma. it is very possible that the very researchers who have associated my name with illness A are potential co-workers and or employers. Its not like I'm trying to hide anything but based on the topic of illness A, I should have the right to selective disclosure where legal.
Can I revoke my HMO's right to release my PHI for research purposes? even if my HMO is performing the research? Which takes priority, HIPAA or my rightful expectation of confidentiality based on the code of ethics by which my health care provider must abide by.