It used to be that the anthropologist traveled far from his/her home, conducted research in a foreign culture, and wrote up findings which never made it back to those who were studied . Globalization and now social media have changed this paradigm (as well as debates over who research actually belongs to and what moral responsibilities a researcher has to those he/she studies). Now, the “natives” are your Facebook friends. This a positive development, we should be in conversation with our research participants, but what does this mean for their confidentiality and privacy?

Trobriand Islanders never friended Bronislaw Malinowski on Facebook. Judging by his posthumously published diaries, he didn't like them enough to accept the request anyway.
This post is more of a question than a statement. It is about research ethics, confidentiality and social media. When I began my research on tuberculosis (TB) in Romania, I did not have a Facebook account. I never imagined that TB patients I work with would be among my Facebook friends and that they would actively share my writings using social media in which they or their loved ones appear.
First, much of my PhD research was conducted at a mountaintop TB sanatorium, that one patient described as “beyond the sight of God.” I spent over two years studying TB and much of that was spent talking to dying people and sometimes even holding their hands while they died. The field site was amazing—visually stunning, but tragic. It was a place of abandonment where many patients would go to die, not just of TB, but also of its complicating factors: poverty and hopelessness. Dozens of patients I interviewed are now dead, but a few of those who survived keep in touch via social media.
I first met Mariana (all names are pseudonyms) in 2009 when I attended a Multi-Drug Resistant TB (MDR-TB) patients’ group therapy session. I had agreed to have a question and answer session about my research and TB in general. The patients sat in a semi-circle across from me. I was nervous. My Romanian is very good, but in 2009 it wasn’t. Worse still, I am terrible at translating when multiple people speak at once. There I was, nervous and awkward; wearing a mask that covered most of my face, trying to talk with patients about what it is like having TB and answering questions TB in America.
I was struck by the diversity of ages in the room. There were many young people. Looking towards a group of patients I joked that this looked more like high school than a hospital. One young woman fascinated me from the beginning. She was in her mid 20s, and looked like a skeleton floating in a fluffy pink robe. Mariana is beautiful and despite being one of the sickest people in the ward, filled the room with laughter and jokes. Then, after I mentioned how I wanted to improve TB treatment in Romania by working with policy makers and the government, she locked eyes with me and asked “Do you really think the government and the people in charge will listen to you?” I told her I did, because TB is a major health problem.” She replied “Then you tell them this: TB is an economic problem and patients need support.” I would interview Mariana many times over the course of my research in Romania. I learned how she had become ill with the disease by caring for her father who died of TB, that she had a little boy and she was very poor. I have close relationships with a number of people I met over the course of my research 2006-2011, but Mariana is the only patient I really think of as a friend. I have written about her in publications in Romanian and English. However, I faced an ethical dilemma when I received her Facebook friend request. I thought, of course I should accept, she IS my friend. I am happy that she can actively consume the things I write about her, and that she even shares them with others (some of whom know the articles are about her and others who do not). While this added an ethically complicated layer to our relationship, I think it is a positive one. We can keep in touch more easily and she is able to read what I write about her and other patients.
“The mother of all the rabbits”
Elena was barely twenty when she died. I didn’t know what to do when her mother found me on Facebook. I knew I was treading ethically problematic ground. She friended me after reading an article I wrote in the Romanian popular press. She told me she knew I had interviewed her daughter before she died. I wanted to say yes, I knew her daughter well, and give her the recording so she could hear her daughter’s voice again, or at least tell her what we talked about—how even though she was dying, she dreamed of being an actress. Finally, I wrote to her, but kept all those details to myself. I told her that I did know her daughter well, that she loved her very much, and I was very sorry for what happened. I tried to comfort her. I felt I had that responsibility. I am a human first and always an anthropologist second. It is hard to know what the right thing to do is when you are so deeply woven into the lives of those you research. When family members come to you asking for information about their loved ones final days what does humanity require you to divulge. I always feel terribly inadequate in these situations. Certainly not everything is sensitive information. Elena told me of how one of her happiest memories in a life full of sickness and suffering was when she played the role of “mother of all the rabbits” in a kindergarten play. Her mother might have liked to know this. She might have liked to know that I cried when I listed to the interview again thinking how her life was so full of suffering that she had to go deep into her childhood to find a happy memory to share with me.
So my question is: how do we as researchers and citizens in this new world of social media balance ethics and privacy concerns with our responsibilities to our informants (which do not end after we leave our field sites)? What might the future look like as more of our informants also become consumers of our research through social media? How can we balance our deceased informants privacy with their loved ones desires to know what their final days were like? What about participants who choose to reveal their identities and take on advocacy roles? Is it not their choice to do this, even though it violates IRB protocol? And finally, do our informants really understand how their activities on Facebook might lead to a breach in confidentiality?














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