Study rating the 'attractiveness' of endometriosis patients pulled after 7 years

A study that rated the "attractiveness" of endometriosis patients without their consent has been retracted seven years after it was first published — but a gynecologist who has the condition says it's too little, too late.

The study — titled "Attractiveness of women with rectovaginal endometriosis: a case-control study" — was published in the journal Fertility and Sterility in 2013. 

It concluded that women with rectovaginal endometriosis, one of the most severe forms of the painful uterine disorder, "were judged to be more attractive" than those in control groups, noting they had "a leaner silhouette, larger breasts, and an earlier coitarche" — referring to the age of first sexual intercourse. All the women in the study were of "Caucasian origin," the study notes. 

After years of defending the research, the journal retracted the study this week at the request of its six authors, who wrote a joint-statement apologizing for the "discontent the publication originated." The journal's editors have not commented. 

"It's hugely problematic," Dr. Rebecca Szabo, an obstetrician gynecologist in Melbourne, Australia, told As It Happens guest host Susan Bonner.

Szabo is a doctor, medical educator and podcast host who has long been calling on the journal to pull the study. She also has endometriosis herself. 

"I think at the time 7½ years ago, and again now, there's been a failure to recognize that the objectification of women exacerbates the issue of not listening to women, particularly those with endometriosis, which is a debilitating condition that ironically takes roughly 7 ½ years to be diagnosed," she said. 

The news comes just weeks after another journal retracted a study that admonished the "unprofessional" behaviour of surgeons who posted photos of themselves on social media sporting "inappropriate attire" such as bikinis or "provocative Halloween costumes."

Endometriosis is a condition in which tissue similar to that which lines the inside of the uterus grows outside of it. More than 10.8 million people around the world have it, according to a 2015 study in the Lancet. 

It can be debilitatingly painful, especially during sex or menstruation, and sometimes causes infertility. There's no cure, and scientists don't know what causes the condition.

Szabo says endometriosis is a vastly under-studied disease. That's part of what makes it so infuriating that this research was funded, while more potentially useful studies have not, she said. 

"We don't completely understand the pathology of it, which is one of the reasons that it's so important that it's appropriately researched," she said.

The study has been a source of controversy among doctors and endometriosis patients since it was first published. It made a splash of headlines as recently as last year when Huffington Post opinion editor Lucy Pasha-Robinson wrote about the study and her own experience with endometriosis.

"There's currently no cure for endometriosis — management options include the contraceptive pill, medically-induced menopause and/or surgery. All of which I have tried, are as fun as they sound, and have proved woefully inadequate in restoring any semblance of quality of life," she wrote.

"But hey, at least science says I'm more attractive for it?"

Why study attractiveness?

Until now, the study's authors and the journal's editors have steadfastly defended the research, arguing that it's useful to know if people with certain physical characteristics — or phenotypes, in medical-speak — are more susceptible to endometriosis.

"Several researchers believe that a general phenotype exists which is associated with the disease," lead researcher Dr. Paolo Vercellini, an obstetrician and gynecologist at Universita degli Studi in Milan and former president of the World Endometriosis Society, told the Guardian.

But Szabo says the methodology — a panel of four men and four women rating 300 patients' attractiveness on a five-point scale — is far too subjective to be useful. 

"My issue with the study is that if that's what their intention was, then perhaps a better scientific approach would have been to look body mass index or other more objective features," Szabo said.

Medical ethics is also a factor, she said, noting that the women in the study did not know the scientists would be evaluating their attractiveness.

"I have some ethical concerns about that," she said. "If I had been approached about that, I would have not consented, and been appalled."

The study received ethics approval, and was publicly funded by the University of Milan.

Why pull it now?

Even in retracting the study, the authors defended their methodology and claimed their findings were misunderstood.

"We conducted the study in good faith and according to correct methodology. We believe that our findings have been partly misinterpreted, but at the same time realize that the article may have caused distress to some people," the authors wrote.

"Women's respect is a priority for us, and we are extremely sorry for the discontent the publication originated."

As far as Szabo is concerned, the statement falls short.

"I don't think it is an apology. I think it's suggesting that we're removing it because people are discontent without acknowledging the cause of their discontent," she said. 

"And the authors have been informed multiple times of people's distress. So I'm a little perplexed by the timing."

She says the Fertility and Sterility's editors should address the specific concerns she and others have raised. 

The journal did not include a statement in its retraction, and did not respond to requests for comment from As It Happens. 

"I think it's really important that we don't just retract this type of article because I don't want it to kind of be left to history," Szabo said.

"We need to have an open discourse, all of us, so that we can ensure good science, so we can ensure responsible science with integrity, and so that journals and authors do change so that we can be sure we're doing things with the patient at the centre, and with respect."

Written by Sheena Goodyear. Interview with Dr. Rebecca Szabo produced by Kate Swoger.