The New England Journal of Medicine (NEJM) has no plans to change the wording of an article that led to allegations of breached patient confidentiality and caused a minor social media firestorm this past weekend, the journal told Retraction Watch.
The paragraph in question appeared in an essay by Lisa Rosenbaum chronicling the history of power morcellation, a technique to remove gynecological organs that the FDA has subjected to a “black box warning” because it can also spread tumors:
Practice changed after 2013, when Amy Reed, a 40-year-old anesthesiologist and mother of six, underwent a hysterectomy with intraoperative morcellation for presumptively benign uterine fibroids at Boston’s Brigham and Women’s Hospital (where I have since joined the faculty). The masses turned out to contain foci of leiomyosarcoma (LMS), a rare, aggressive cancer that has a 5-year survival rate of 63% when diagnosed at stage I. Reed’s LMS was stage IV, so her likelihood of surviving 5 years was only about 14%.
The Cancer Letter, along with Reed and her husband, Hooman Norchashm, who have been on a campaign to ban power morcellators, interpreted that passage to mean that Reed “had stage IV cancer at the time of her hysterectomy.” That would, presumably, weaken the case for the FDA’s warnings, as well as the legal cases Noorchashm and Reed have against the hospital and a power morcellator manufacturer.
In a story published late on Friday, The Cancer Letter reported that Reed, concerned that Rosenbaum had accessed her medical records without permission, had “filed a complaint under HIPAA, the Health Insurance Portability and Accountability Act, with the Office of the Massachusetts Attorney General and the HHS Office of Civil Rights.” Brigham and Women’s, the Letter reports, said an investigation had found Rosenbaum did not access Reed’s records.
It is easy to say, as some have, that The Cancer Letter jumped the gun on this story, given what we now know about what NEJM says they meant (more on that in a moment). But that would seem to ignore the fact that NEJM had several opportunities to clear up the confusion surrounding that sentence.
The first, which in hindsight seems likely to have nipped the whole controversy in the bud, was when The Cancer Letter asked NEJM for comment sometime before the story about the essay ran Friday. The journal’s response:
NEJM officials declined to respond to The Cancer Letter’s questions on sourcing, citing an “ongoing investigation prompted by a complaint filed with a government agency.”
The second, which they took advantage of after the story was being discussed on social media — but apparently while the investigation was still ongoing — was when Michelle Meyer contacted them for a post she published Saturday at Forbes. The essay, a NEJM spokesperson told Meyer,
was not reporting that the cancer was stage IV before the time of the initial fibroid surgery. It would be impossible to know this.
Meyer even offers a helpful rewrite of the sentence in question (italics mark changes):
Following—and likely as a result of—morcellation, Reed’s LMS was diagnosed as stage IV, so by then her likelihood of surviving 5 years was only about 14%.
NEJM’s other opportunity is, of course, to correct or clarify the actual piece, which they could do at any time. When we asked whether they would be doing so, however, a spokesperson said “we don’t plan to change the article.”
This is not the first time in recent memory that NEJM has declined to correct the record when issues were brought to the their attention. The New York Times reported on one such case earlier this month, in which the journal published a letter without realizing it omitted critical data about anti-clot drug Xarelto. And to be fair, they are hardly the only journal that doesn’t jump to issue corrections, as a recent analysis showed. (Correcting the record, we hasten to note, does not necessarily mean retraction.)
The Cancer Letter, for its part, says a new story is coming in response to the journal’s comments over the weekend.
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