My son and I recently saw the Oscar-winning documentary “Citizen Four” about NSA contractor and leaker Edward Snowden. It's a riveting film, because it not only covers the topic of unwarranted government surveillance, but it was made in real time, as Laura Poitras, the filmmaker, was in Hong Kong filming Snowden and reporter Glenn Greenwald as the first stories broke and Snowden's identity became known.
It's an interesting coincidence, then, to read the obituary of an almost-whistleblower by the name of Dr. Irwin Schatz. Schatz is remembered for writing a letter to the authors of a medical journal article in 1965 about the infamous “Tuskegee Syphilis Study,” in which black men in the South, primarily Alabama, were followed without treatment for decades to learn about the natural history of untreated syphilis. The study was administered by the United States Public Health Service, and is widely remembered and taught as an egregious example of bad medical ethics. If the profession's dictum is “First, do no harm,” the Tuskegee study caused irreparable harm by not treating an illness for which there was a surefire cure: penicillin.
The obituary contains all of Schatz’ 3-line letter, which was sent to the study's senior author:
“I am utterly astounded by the fact that physicians allow patients with potentially fatal disease to remain untreated when effective therapy is available. I assume you feel that the information which is extracted from observation of this untreated group is worth their sacrifice. If this is the case, then I suggest the United States Public Health Service and those physicians associated with it in this study need to re-evaluate their moral judgments in this regard.”
Unfortunately, when his letter went unanswered, he did not persist. It took the whistleblowing of a Public Health Service investigator named Peter Buxtun to finally bring the study to a close in 1972. Unsurprisingly, it took Buxtun a number of tries to bring the unethical nature of the study to light. He first tried to go through official channels, as early as 1966, but was met with resistance on several occasions. It wasn't until he leaked the information to a reporter at the Washington Star that the story received enough attention to stop the study.
Snowden registered his concerns with his superiors, too, before ultimately deciding to go to the media because no one in the hierarchy seemed poised to question the status quo.
This post by John H. Schumann, MD, FACP, originally appeared at GlassHospital. Dr. Schumann is a general internist. His blog, GlassHospital, seeks to bring transparency to medical practice and to improve the patient experience.