ClimberGuy
Junior Member
What is the name of your state (only U.S. law)? 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. In this case, they didn't.
I just received a letter from a research team at my HMO (separate from the business operations) 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. If this letter had been opened by an employer, fellow graduate student or professor, I could be facing a world of bias based on the stigma of Illness A. No it isn't HIV or anything that requires disclosure for health purposes.
I am pursuing a career in a field where the stigma of Illness A would most likely 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 future 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 legally revoke my HMO's right, under HIPAA, 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.
NOTE:
a) the letter came from the research team, not the HMO business
offices. The researchers had my identity and objective knowledge of my
"illness". My information was already in the hands of strangers not sworn to
confidentiality by any governing body.
B) yes the HMO has my PHI for business purposes
c) The question wasn't about it being a crime to open USPS mail. I never
mentioned "employer"
d) The question didn't request a subjective response about paranoia which cannot be made without knowing the entire context of he situation.
e) The question is: Can I prevent my HMO (and care provider) from releasing my PHI to their and other researchers? The answer has far reaching legal ramifications for many other than myself.
On a legal forum. I would have expected the question to be read and fully understood prior to responding. That's why I posted it here.
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. In this case, they didn't.
I just received a letter from a research team at my HMO (separate from the business operations) 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. If this letter had been opened by an employer, fellow graduate student or professor, I could be facing a world of bias based on the stigma of Illness A. No it isn't HIV or anything that requires disclosure for health purposes.
I am pursuing a career in a field where the stigma of Illness A would most likely 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 future 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 legally revoke my HMO's right, under HIPAA, 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.
NOTE:
a) the letter came from the research team, not the HMO business
offices. The researchers had my identity and objective knowledge of my
"illness". My information was already in the hands of strangers not sworn to
confidentiality by any governing body.
B) yes the HMO has my PHI for business purposes
c) The question wasn't about it being a crime to open USPS mail. I never
mentioned "employer"
d) The question didn't request a subjective response about paranoia which cannot be made without knowing the entire context of he situation.
e) The question is: Can I prevent my HMO (and care provider) from releasing my PHI to their and other researchers? The answer has far reaching legal ramifications for many other than myself.
On a legal forum. I would have expected the question to be read and fully understood prior to responding. That's why I posted it here.
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