Research is often conducted without the knowledge or consent of those whose tissues are banked and poses possible harms to social groups if information about a few members is unscientifically applied to all.
Fibromyalgia, with no positive tests, is a “foreigner” in the medical landscape. Medicine looks for signs of pathology, changes in the structure or function of organs. The mantra of physicians facing patients with fibromyalgia: “Your tests are normal.”
The legal definition of a patient and the corresponding duties of the physician have been debated in state courts for over a century, and many aspects of the question are still unresolved.
There are two main approaches to telling patient stories in medical memoir. One is securing informed consent from the patients whose stories we tell; the other is de-identification. Each of these, however, creates new problems.
Asking for forgiveness may be oppressive to a patient or family still grappling with the fact of the harm, the impact of the harm, and their own emotional response to the harm.
Transparency about teaching hospitals’ educational mission respects patient autonomy and aligns patients’ interests with those of trainees and the public.
AMA J Ethics. 2017;19(6):537-543. doi:
10.1001/journalofethics.2017.19.6.ecas1-1706.