The very existence of my research site is unethical. It is a place of poverty and death—a mountaintop tuberculosis sanatorium in Romania where many patients are incurable. They know their situation is hopeless. Dozens of patients I have personally known died during the course of my research. Some have told me that because they are dying, they want to tell me their stories and to help those who still might live. I enter into every interview knowing that I may not have the opportunity for follow-up questions. My months living there were filled with ethically tricky situations, from patients (and nurses) asking for my medical opinions to being propositioned sexually by patients. The worst was when Florin a chubby-faced 20 year old patient committed suicide the same day I interviewed him. His doctor gave him the bad news that he had the same highly resistant strain of TB as his father and he would have to stay at the sanatorium much longer. He was so scared, that evening he left and hung himself. I didn’t find out until months later when I asked his father, now also dead of Multi-Drug Resistant Tuberculosis (MDR-TB) how his son was. I didn’t know what despair looked like until I saw that man, cheeks sunken in, wearing his dead son’s brightly colored hooded sweatshirt. When he finally died, I was disgusted with myself for thinking it was merciful–that maybe death was better than constantly being tortured for infecting his son with a deadly disease. My university Institutional Review Board (IRB) did not prepare me for any of this—in fact nothing did. Here I was worrying about protecting my participants from my research, but who was protecting them from their own lives?

© Jonathan Stillo This couch, where crying relatives sit waiting for the patient to be admitted is the saddest place in the sanatorium. Sometimes, the goodbyes said here are final ones.
The most important “ethics review” I ever received did not come my university’s Institutional Review Board (IRB), or the Romanian medical ethics board which both approved my anthropological research on tuberculosis in Romania. Rather, it came from Mr. Gheorghe, a fifty year- old Roma man dying of MDR-TB, when he stepped out on the sanatorium balcony and told anyone within earshot something close to the following: “Jonathan is a good person. He wants to know about your lives and your families. You should talk to him.” I could feel myself blushing as he said this. His opinion mattered to the other patients, especially because he was the one selling them cigarettes out of his nightstand. Suddenly, other patients seemed eager to speak with me when they had been aloof and skeptical only days before. Gheorghe didn’t live long enough for me to thank him, he died of a “massive hemoptysis” a technical way of saying he coughed up a massive amount of blood. This is how TB patients often die and it is terrifying.

©Jonathan Stillo Hemoptysis- As patients grow sicker, they cough up blood, sometimes pints at a time.
It took years for me to obtain the official permissions required to live at a Romanian TB sanatorium. I even had to sign a waiver for the U.S. National Science Foundation that they were not liable if I caught the disease. But just having the permission of my university and the Romanian government were not enough. I had to actually ask patients for their permission to ask them about sensitive issues, sometimes asking dying patients about their regrets and about how their families will survive without them. Part of my initial problem was I didn’t know how to ask the patients to let me interview and survey them. Following my IRB protocol, I showed them my stamped informed consent, a full page of Romanian legalese with talk of risks and benefits. I would read sections out loud and the more “informed” the patients became the more uncomfortable they became. This level of formality does not exist in most aspects of their lives. They could not understand that if I only wanted to talk with them, why I needed such involved paperwork with multiple signatures, dates and stamps. In fact, when I submitted my original protocol to the Romanian medical ethics board, I was laughed at and told that this research did not need approval because it was not “clinical”.
What did patients care about? That I would protect their identities and that the process was voluntary. Everything else, including talk of risks and benefits, names and numbers of people to contact, made them uncomfortable. They just wanted my assurance that I would maintain their confidentiality by not publishing their names. Many patients did not even have an expectation of privacy and did not feel qualified to make the decision as to whether or not they should participate in my research. They did not want to hear about protocols. Rather, they wanted someone that they trusted to tell them it was ok and that they could trust me. A document from my IRB could not accomplish this, only someone else vouching for me could.
I gained the endorsement of Mr. Gheorghe by accident. There was no plan, he just seemed willing to talk so I sat on his bed with him and asked about photographs on his wall, one of a handsome young man in a military uniform (him during socialism), another of a strikingly beautiful woman on a motorcycle (his 18 year old daughter) and my favorite, him and his wife proudly standing with their eight children in front of their rural home. He told me that doctors never sit on patient’s beds and they never ask about things like this. Visiting doctors and researchers only care about numbers and information on the patient charts. They are not interested in patient’s lives, only their disease.
In my last post, The Trobriand Islanders Never Friended Malinowski on Facebook, I suggested that the reason for the existence of IRBs is not primarily the protection of research participants. Rather, it is to provide legal protection to institutions such as hospitals and universities which despite their non-profit status, operate more like businesses every day. Every researcher connected with the CUNY system must undergo an online ethics training course where they are without fail, asked questions about the Tuskegee syphilis study and the importance of informed consent. The problem is that researchers in any time are operating under the ethical norms of their particular time and place. Withholding antibiotics from those men long after their syphilis could have been cured is ethically unconscionable now, but then, it was not, at least to enough of the people involved. Today, it is still the medical industry (specifically pharmaceutical companies) that is pushing (and in my opinion far exceeding ethical boundaries, in spite of the presence of IRBs in virtually every medical and educational institution.

US CDC Venereal Disease Branch (1970-73) Tuskegee syphilis study doctor injects subject with placebo
In Romania, people generally don’t sue each other, especially the impoverished patients I work with. They live on a mountain “beyond the sight of God” as one patient put it. They don’t have access to lawyers and cannot even call or email the contact info on my informed consent because they lack internet access and money for international calls. When these patients give me their informed consent, it is informed by the personal relationship I have with them and those they know. They do so with the knowledge that they would have little recourse if I did behave unethically. It makes their consent all the more meaningful. Ultimately consent, at least in my research site, has little to do with my protocols and institutional approvals. For the patients informed consent is not something I read out loud to them, it is earned over the course of months through drinking coffee, staring off the balcony and exchanging stories of our families. It is something I take seriously not because of the IRB, but because I know that the people sharing their lives with me trust me on a personal level. I owe it to them to behave in a way that is ethically appropriate and respects their humanity and dignity. I think at this point we have a system of ethics approval which is designed by clinicians and enforced by lawyers for the protection of hospital and university endowments in a litigious society. It is the worst of possible worlds and despite best intentions 20 years from now, future researchers will read of all of the unethical research that took place even in this age of IRBs.
I think part of the issue is that ethical research means different things to different people and institutions. In the technical, clinical and legal language of U.S. IRBs, it means limiting “risk” to the study participants. This definition of ethics was inadequate for one of my Romanian transcribers who did not want to work on my project unless there was an actual benefit to Romanian TB patients—that I am not simply studying their “biosociality” or some other nebulous academic nonsense, but rather trying to use my research to improve people’s lives. I told her that is the only reason why I research. This is the same concern that many patients had. However, it never comes up in my U.S. ethics reviews. I wish it did.
















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