Forced To Remain An Identfied Research Subject

I am attempting to withdraw from being a research subject at a major children’s hospital. Basically, I was a patient there for close to 2 decades. I was enrolled in a study in 2020, under the condition that I could withdraw at anytime without giving reason. This study involved collecting tissue from

a surgical procedure. Terminating involvement in the study meant that the researchers could continue to use my tissue for bulk analysis, it would no longer to connected to my PHI. I was comfortable with this arrangement.

In June 2025, I contacted the clinical research coordinator, the PI, and lead investigator to terminate my involvement as an identified, PHI linked, subject. I was told by the coordinator that my termination would include anything ongoing. However, I discovered use of my PHI in a paper published at the beginning of this year. I then requested an IRB investigation with the hospital because I was told in writing that it would not. Apparently the study wasn’t under the original study/IRB I had initially entered, and even so their study was deemed IRB exempt.

I’m not happy about this, but I understand the determination. I felt like the second IRB was kept from me and should have been told to me when I asked about other studies and expressed interest in termination.

That being said, I do not want to be used in any capacity as an identified research subject any longer. I expressed this with the hospital IRB team and other than to opt out of recruitment, their response was that they “cannot restrict the use of my identifiable or de-identified health information for research, and that no mechanism exists to exclude my PHI from being used again.” All I am asking for is an Epic advisory alerting those that interact with my chart that my PHI is not to be used for research.

I believe that this is in direct violation of the Belmont Report and the inability to protect myself is causing a great deal of distress, since this is not what I was told when I initially consented.

Complicating this further is that I used to work for the department that is currently using my PHI. They already have me on their list, so I can’t opt out of that recruitment. I have requested that the PI add this advisory himself. He’s given me verbal “promise” that this won’t happen again, but I don’t think that’s adequate. I don’t know what my options are. This feels like a human rights violation.

I genuinely don’t know who to talk to.

Location: Pennsylvania