Do you have the right to tell your own story?

Guest post by James M. DuBois, DSc, PhD

Publishing shares something in common with roller coasters: The rewards are strongly and positively correlated with the capacity to instill fright.

A group of us recently started a new journal, Narrative Inquiry in Bioethics: A Journal of Qualitative Research. While we publish some traditional types of articles, our hallmark is the “narrative symposium”—roughly 12 personal stories on a common theme followed by two commentary articles that draw out lessons from the stories and relate them to current debates. Our first volume (sample PDF) explored the experiences of a hospitalized psychiatric patient, a physician with conflicts of interest, and a nursing assistant providing care at the end of life. The stories we have published thus far are forthright and compelling, often moving, and always educational. It has been a rewarding endeavor.

Nevertheless, the day before publishing our first call for papers, I woke up at 2 a.m. worried: What if a nursing assistant names an administrator who ignored reports of elder abuse? What if a physician discloses that a specific corporation offered to pay kickbacks for referrals? Eeek! Of course, we already had a confidentiality policy in place, but the reality of soliciting a large number of stories on sensitive topics made me question just how good it was.

I  hoped the session might present an emerging consensus on the issue. Quite the opposite: Discussion was lively, reflections were deep, and there were no uniform practices.

After digging through the literature and interrogating ethicists and lawyers, we found a hodgepodge of rules and rulings regarding the disclosure of information about “third parties” such as employers, colleagues, family members, or institutions. In some situations there are clear and strict rules: educational records and health records are federally protected. Generally speaking, we cannot share such information about an identifiable individual without written permission. Other rules—such as libel laws—are clear per se, but can be challenging in application. Still other domains of law have yet to be adequately clarified by the courts. One emerging trend: individuals can be held liable for damage done by publishing true statements about others that are embarrassing or harmful to reputation, but plaintiffs rarely win when the disclosure of information serves an important public good.

Then I noticed that the upcoming conference of the American Society for Bioethics and Humanities included a session entitled, “Publishing other people’s stories: Editorial practice and policy on the ethics of patient-subject confidentiality and consent.”  This sounded providential. Although we could not wait until after the conference to adopt a policy, I  hoped the session might present an emerging consensus on the issue and confirm our practices.

When I attended the session about two months later, I discovered quite the opposite. Discussion was lively, reflections were deep, and there were no uniform practices. Between the panelists and audience participants, we heard from the editors of at least seven journals. One journal had no policy on the matter. Some journals insisted that all details be truthful, while another routinely insisted on fictionalization. Some appeared to have a high tolerance for legal risk; another insisted on signed permission for all references to private information about third parties.

One journal focused more on ethical duties to the author than to third parties, noting that most authors feel that they own their story—it’s a segment of their life and they have a right to tell it. This is an interesting idea. If a man was beaten as a child by an alcoholic father, does he have the right to tell the world that aspect of his story? Or does the father have a right to privacy that cannot be trumped by the right to tell one’s own story?

Overall, I think our journal has adopted a fairly sensible ethics policy that grants authors flexibility in how they protect privacy even while insisting that they do so. I know it helps me sleep better at night.

James M. DuBois, DSc, PhD, is an editor of  Narrative Inquiry in Bioethics. He is the Hubert Mäder Professor of Health Care Ethics and directs both the Bander Center for Medical Business Ethics and the Social Science Research Group at Saint Louis University. He is also an adjunct professor of medicine at the Washington University School of Medicine, where he directs the Center for Clinical Research Ethics within their NIH-funded Institute for Clinical and Translational Science.