Monsters and the Ghosts of PubMed

Sarah McCord can’t quite remember when she discovered that PubMed was still calling conjoined twins “monsters.” She does, however, remember being startled.

“It bothered me,” she wrote to me, “because it seemed like there were all kinds of news stories about conjoined twins being surgically separated, and I knew that there would be more searching on the topic than there had been in the past. I wondered how seeing this term might affect a family member looking for information.”

Sarah is Head of Reference & Instructional Services and Associate Professor of Library Resources at the Massachusetts College of Pharmacy and Health Sciences. As a medical librarian, she thinks not just about what healthcare professionals need to find, but also what patients and their families will encounter.

Sarah and I found ourselves in conversation after she wrote to advise me of something she had done, something that startled me far more than the subject term “Monster” had startled her: Sarah was writing to say that, since 2007, she had been steadily nudging the National Library of Medicine (NLM) to stop listing human offspring as monsters, and that she had recently succeeded. The NLM had officially replaced “Monsters” with “Abnormalities, Severe Teratoid” in the official Medical Subject Headings (MeSH) used in PubMed. And Sarah wasn’t done; she was pushing for the for-profit medical databases, including Elsevier’s EMBASE, to do the same, and she was succeeding.

My mouth dropped open when I read her first email describing her efforts. And I thought immediately of three people.

The first was a man named Tom, born with hypospadias (an anomaly of the penis), who appeared in the 1996 homemade activist film, Hermaphrodites Speak! In the film, Tom remembers that, in spite of surgeons subjecting his genitals to “normalizing” surgeries, no one told him the name of his condition. One day, someone inadvertently dropped the word “hypospadias” in reference to him. Young Tom snuck off and looked up “hypospadias” in the encyclopedia, only to find this: “Hypospadias; see Monster.”

The second was Deb Costandine, whom I helped figure out what her stillborn conjoined twins had looked like thirty years earlier.1  When I had sent Deb a copy of a case report from a 1980 issue of Archives of Gynecology of conjoined twins who resembled her lost sons, I had had to write, “I have to warn you that it includes the obnoxious term ‘monster’ and explain that this was used by physicians until the 1990s as a standard term for a major birth defect. Some still use it, but it is obnoxious because of what it connotes. [….] It is obvious that people are not monsters, and doctors should have stopped using that term a long time ago.”

And the third was George Annas, whose 1987 article in The Hastings Center Report had articulated for me something

I had been struggling to explain in my own work on conjoined twins.2  Annas disdainfully called the business of subjecting conjoined twins to a separate (indeed, lethal) kind of medical ethics “monster ethics”—an ethics that says surgeons can do whatever they want up until the point when they make these “monsters” human, even “kill one to save the other.”

When Sarah first got in touch, she explained she was letting me know about the PubMed shift for several reasons: “(1) these changes may affect the way you search for information, and (2) these changes will affect the way (a very small part of ) your work is classified and categorized. And, honestly, reason (3) for dropping you this note is that I was delighted to discover a scholar who might actually care that these changes […] have been/will be made.”

Care, I did. I immediately wrote Sarah back fan mail, telling her there was no doubt in my mind her action would benefit real people, people like Tom and Deb. That graphic horror movie label would no longer be slapped on the marquees of their lives, at least not in PubMed.

Sarah admitted, “I did have a colleague ask if making the changes would be a lot of work ‘for such a small number of articles.’” (A case of monster librarianism? Why worry about what happens to those labeled “monsters”?) She said she responded by reminding her colleague about how ADA-required curb cuts have turned out to help far more people than just chair-users. “Big changes come from small changes,” she concluded.

Of course, it seems unlikely that any of the sensible folks at the NLM found her suggestion anything but long overdue. Sarah hastened to point out to me that it was the NLM staff, not she, who came up with the new term. Still, it says something that it took until 2010 for the largest public database of medical literature to shoo out this particular ghost of medical history.

By coincidence, monster ethics came up this past weekend in an email correspondence with my good friend Kiira Triea. When Kiira’s mother had been pregnant with her, doctors gave her mother progestin to try to prevent a miscarriage. Consequently, Kiira, a genetic female, was born with virilized genitalia. As a terribly femme teenage boy, Kiira ended up in the infamous Johns Hopkins clinic of John Money. Money tried to make the boy more manly—Kiira was messing with Money’s theory that gender comes from nurture—but failing that, Money finally “let” Kiira become a girl.3

Lately I’ve been pushing Kiira to do more autobiographical writing. In her last email, Kiira was sharing my frustration with a disciple of Money who keeps getting away with sub-human treatment of sex-atypical children. “They just tell a few monster stories, so the parents will come around to the intervention the clinician wants to do,” she wrote to me about this kind of clinician, “and everyone understands how important their ‘work’ is.”

“Oh,” she added, “there’s the name of my book: Monster Story.”

Like me—like Sarah—Kiira knows that only medicine has enough mojo to make a baby a monster. Or to make her a person, with just a charmed word.         

1. Dreger AD. Products of Conception. In: Bioethics Forum: The Hastings Center; 2007.
2. Annas GJ. Siamese twins: killing one to save the other. Hastings Cent Rep 1987;17:27-9.
3. Triea K. Power, Orgasm, and the Psychohormonal Research Unit. In: Dreger AD, ed. Intersex in the Age of Ethics. Hagerstown, Maryland: University Publishing Group; 1999:141-4