Do you have the right to tell your own story?

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

Together with Ana Iltis, Susan DuBois, and the journals division at Johns Hopkins University Press, I recently started a new journal, Narrative Inquiry in Bioethics: A Journal of Qualitative Research. While we will publish some traditional types of articles (such as cases studies and qualitative research reports), our hallmark will be “narrative symposia.” These will consist of 8 to 12 personal stories on a common theme followed by commentary articles that analyze the stories. Issues in our first volume will explore experiences as a hospitalized psychiatric patient, as a physician with conflicts of interest, and as a nursing assistant providing care at the end of life. I cannot wait to read our first three issues. I believe the stories will be interesting and will contribute to a deeper understanding of important topics.

Nevertheless, the day before publishing our first call for papers, I woke up at 2 a.m. worried about terrible scenarios: What if a psychiatric patient had a bad experience of hospitalization and starts naming attending physicians? 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 kick backs for referrals? Eeek! Later that day I threw the brakes on our call for papers and the editorial team began a process of discerning how we would address such possibilities. 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.

After quite a bit of 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 when publishing a story. In some specific 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 are clear per se, but can be challenging in application, such as libel laws. Still other domains of law have yet to be adequately clarified by the courts. A new sphere of case or tort law appears to be emerging dealing with privacy: 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 (i.e., the courts still recognize the general value of a free press—although rules for reporters vary from state to state and may differ from rules for academic publishers).

Shortly after beginning this process, I noticed that the upcoming conference of the American Society of 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: Lady Fortuna’s wheel was spinning upward. Although we could not wait until after the conference to adopt a policy, I had hoped the session might present an emerging consensus on the issue and confirm our practices. However, when I attended the session about 2 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 7 journals. One journal had no policy on the matter. Some journals insisted that all details be truthful—cases could not be fictionalized (e.g., by changing names or dates); 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? Do the courts have the right to settle such issues?

Overall, I think our journal has adopted a fairly sensible policy that grants authors flexibility in how they protect privacy even while insisting that they do so. Click here to read our policy. (Scroll to “Ethics—Protecting the privacy of third parties”). Comments are welcome!

Surgery does not look difficult to me

I’ve butchered a deer, dissected a cat, and sewn buttons and hems. The first time I observed a cardiac bypass I honestly thought: “That does not look very difficult—I could do that.” (Bear in mind, my degrees are in psychology and philosophy.)

Of course, surgeons spend 5-7 years in residency training after completing medical school. They usually know which incisions provide best access to targeted parts and which incisions heal best; how to avoid infections; where to find spare tissue for grafts; and when to ties things up and call it a day. Some develop the skill to tie knots they cannot see; some have incredible manual dexterity and can close an incision without leaving a scar. I know its best to leave surgery to surgeons.

I’m always astonished at the people who decide they’re just going to do a survey or conduct a few interviews. When they do I’m not surprised that their results are invariably worthless or harmfully bad.

As a general rule, you should not design a survey if you cannot explain:

-       What is a construct? And how do we know if we are measuring what we hope to measure (and not something very different)?

-       What is a representative sample, and when does representativeness matter?

-       How to estimate the power of a study.

-       What kinds of reliability are there? Which matter for your study?

-       How to set up a database, clean data, and analyze data.

No, you should not even write the survey items if you cannot explain:

-       Why the way you phrase an item will determine which statistic must be used (or whether any statistic can be meaningfully used)

-       What is a well-formed item or question? And why the word “and” should never appear in an item.

-       Why true/false items are famously bad.

-       What is content validity and how does it differ from construct validity?

A good methodologist knows the answer to all of these questions and has the skills to design your study and analyze your data.

To be clear, methodologists cannot design a good survey by themselves. Presumably, if you want to design a survey on a given topic (say, public attitudes toward biobanking), then you have some knowledge about the topic. This knowledge will be essential to writing items that have good content validity—and your average methodologist or statistician will lack this knowledge. This is why so few social science articles have just one author: A good survey usually requires the complementary expertise of multiple individuals.

However, collaboration alone is not sufficient to guarantee the quality of a survey. You need to collaborate with competent individuals, and the timing of the collaboration matters. Meet with a methodologist before you finalize your questionnaire items or interview guide. Even though you may think these matters pertain to content, the concrete form that survey items or interview questions take will influence the validity and reliability of your study.

Conclusion: Collaborate with a methodologist, and do it early in your project.