The fine line of privacy in design research

I’m currently conducting qualitative research on how socioeconomics affects pregnancy experiences and birth plan choices with my partners Anna Krachey and Meghan Corbett. Our research participants tend to fall into two categories: pregnant women and the public health professionals who serve them – both directly and indirectly.

The public health professionals are comfortable, talking for ages about pregnant women and sexual health education. Their information and experiences are invaluable. Since they do this for a living they can usually talk about the subjects freely with little concern for their personal privacy. While we don’t publish names or faces, a few of them have told me I could do so if I liked.

Conversely, and not surprisingly, the pregnant women I’ve spoken with are often very concerned with privacy. The more difficult or unfortunate their experiences, the less comfortable they feel sharing their stories or having any photos taken – even if the photos don’t include their face.

Originally I was going to write this blog post about one of our research participants. She had already had a child and then had tubal ligation – that means getting your “tubes tied” so you can’t get pregnant. Unfortunately, the procedure failed and she became pregnant unexpectedly.

I wanted to share her story with my perspective on how the medical system failed her. But the more I wrote, the more protective of her I felt. To meaningfully tell her story, I would have to reveal details about her life. While I wouldn’t publish her name or personally identifiable information, I kept thinking – what if she looked me up and found this post? Would she feel betrayed or hurt?

She did agree to participate in the research, and I was clear that I would present her story anonymously.  But aside from a name and photo, the lines can become blurry – at least for me at this point in time.  If this were design research for a consumer products company and my research participant told me why she hated her cell phone service, I wouldn’t care about sharing her sentiments. Revealing the anonymous stories she shared would likely have little to no consequences or emotional impact on her.

But when it’s about the conflicted feelings she has over an unplanned pregnancy – which could result in a baby – it’s a different story. These are real lives and intimate experiences that I have a great responsibility as a researcher to protect. What if I make a mistake, sharing something a little too specific to her individual experience? What if someone close to her puts two and two together and discovers information not meant for their eyes or ears?

While it’s highly unlikely, even next to impossible, it’s still a concern I have. Sharing someone’s story can spur change and help build support for the eventual product or service my team and I builds – which will hopefully help serve women with unplanned pregnancies like my research participant. That said, I’m still figuring out how to walk that line of privacy as I continue with my research.