Disease names can pose ethical problems

Thomas Parran Jr. was a medical pioneer. He was also involved in research in which humans were deliberately infected.
Thomas Parran Jr. was a medical pioneer. He was also involved in research in which humans were deliberately infected. (AP Photo)
Posted: October 02, 2012

The American Sexually Transmitted Diseases Association has a problem.

For 40 years, it has honored members for distinguished achievement with the annual Thomas Parran Award.

Parran, who served as surgeon general from 1936 to 1948, was a public-health advocate and led a national campaign to eradicate syphilis.

"He was a giant in the field," said Jeanne Marrazzo, an international infectious-disease specialist and immediate past president of the association.

But last year, a presidential commission, led by University of Pennsylvania president Amy Gutmann, confirmed that Parran's legacy was tainted. He had condoned unconscionable research in Guatemala, similar to the infamous Tuskegee syphilis experiments on black men in the American South.

In the Guatemalan study, designed to test the effectiveness of penicillin and funded by the United States, 1,300 unsuspecting people were infected with gonorrhea, syphilis, and chancroid, and made to suffer, half of them without any treatment.

The report found evidence that Parran knew, and even told one of the researchers that such a study would not be permitted in the United States.

"If he had a shred of compassion, especially when it came to justice in medical care, he should not have let it happen," said Marrazzo, who is working with the association's membership on a proposal to rename the Parran award to something more generic.

"It's sad, very sad," she said. "On the other hand, you're dealing with someone who really devoted his life to the work. Without him, we wouldn't be where we are today."

At the heart of the association's dilemma lies a larger issue. Naming rights in the medical world are often haphazard, sometimes unfair, and occasionally - as in this case - disgraceful.

"There is a long tradition in the patriarchal system in medicine, honoring these mentors and gods by naming diseases and conditions after them," Marrazzo said. "But we never know anybody very well." When dark secrets are revealed, it can be hard to revoke the honor.

Wegener's granulomatosis, for example, a rare autoimmune disease, is named for Friedrich Wegener, a German pathologist recently outed as a Nazi storm trooper.

Wegener's past was uncovered in 2006 when Eric Matteson, a rheumatologist at the Mayo Clinic, was researching a biographical article about the physician. Not only did he discover Wegener's Nazi connection, but he also found that Wegener's medical-school roommate had beaten him to describing the disease.

Last year, Matteson and his colleagues succeeded in renaming the disease "granulomatosis with polyangiitis" with Wegener's in parentheses. They wrote letters to key medical journals and petitioned several medical societies, which all agreed to adopt the new name.

But it could take a decade or more before the old name falls out of use.

More than 10 years ago, Reiter's syndrome, another vascular disease named for a Nazi doctor, was changed to "reactive arthritis." Yet "Reiter's" continues to pop up in journals and textbooks. Diseases, explained Matteson, "often get named by the person who wants to make a name for himself or their friends. It's very informal how names get put in the literature."

In addition to illnesses and awards, namesake devices can also merit a sobering asterisk.

The Sims speculum, used in women's pelvic exams, was developed by Marion Sims, a surgeon whose pioneering work in the 1800s led to many technical advances in obstetrics and gynecology. Sims, however, had been a slave owner and many of his techniques were perfected on slaves.

His legacy raises difficult questions, Marrazzo said. Should Sims be held to current ethical standards, or judged in the context of his own era? Does the shame in the fact that his patients were slaves override the benefits they received from his care? Would they have received the medical attention they needed if he had not treated them?

Glitchy eponyms are not the only reason medical terms evolve.

"Mongolism" gave way to "Down syndrome" in the 1950s. "HIV/AIDS" started out in the 1980s as "GRID," for "gay-related immune deficiency." "VD," for venereal disease, morphed into "STDs," sexually transmitted diseases, and now - if you read pamphlets in any college health center - has changed again, to Sexually Transmitted Infections.

Advocacy groups can play a major role.

The Rheumatoid Patient Foundation, for example, is on a mission to rename rheumatoid arthritis. John Davis, a rheumatologist at the Mayo Clinic who is cooperating with the foundation, says tagging the autoimmune disease as an arthritis reduces a potentially fatal systemic illness to only one of its many symptoms.

As a result, he said, the misnomer hampers researchers' ability to obtain funding and patients from receiving adequate insurance coverage.

The substance behind some changes in medical language can be more ambiguous, such as the evolution of "ERs" for emergency rooms to "EDs" for emergency departments. And that ED, of course, is not to be confused with the other shorthand promulgated by Big Pharma advertising, which decided "impotence" just doesn't have the same ring as "erectile dysfunction."

Among clinicians, there is some griping that all this meddling with their language is an intrusion by the political-correctness police.

No longer is it acceptable to say the patient "denies" a symptom, because it sounds as though an accusation has been made. No longer is it OK, in some settings, to even call the health consumer a "patient." Or specify that the "health-care provider" is a "doctor."

Even Marrazzo, who says most of the changes have been warranted and reflect a real need for respect, has to wonder at times, "Where does it end?"

Or should she have said "pass away"?

Contact Melissa Dribben at 215-854-2590 or mdribben@phillynews.com.

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