A widely criticised peer-reviewed study that measured the attractiveness of women with endometriosis has been retracted from the medical journal Fertility and Sterility.
The study, Attractiveness of women with rectovaginal endometriosis: a case-control study, was first published in 2013 and has been defended by the authors and the journal in the intervening years despite heavy criticism from doctors, other researchers and people with endometriosis for its ethical concerns and dubious justifications, with one advocate calling the study “heartbreaking” and “disgusting”.
The study’s conclusion was: “Women with rectovaginal endometriosis were judged to be more attractive than those in the two control groups. Moreover, they had a leaner silhouette, larger breasts, and an earlier coitarche.” Coitarche is the age at first sexual intercourse.
Rectovaginal endometriosis is a severe form of the disease in which tissue similar to the lining of the uterus – called endometrium – grows outside the uterus, often attaching to other organs and causing pain, scarring and sometimes infertility. One in 10 women and other people with a uterus of reproductive age have the disease.
The women taking in part in the study had not given their consent to be judged for their attractiveness and did not know this was happening as part of their medical consultations. The study received ethics approval and was publicly funded by the University of Milan school of medicine. The authors asked the women about their sexual history and measured their body mass index, waist-to-hip ratio and breast-to-underbreast ratio. Only Caucasian women were selected for inclusion in the study.
Authors have defended the study, saying that knowing if certain phenotypes – or bodily characteristics – were more susceptible to severe endometriosis would be useful. The lead researcher, Dr Paolo Vercellini, an obstetrician and gynaecologist at Universita degli Studi in Milan and past president of the World Endometriosis Society, said: “Several researchers believe that a general phenotype exists which is associated with the disease.”
But critics, including American gynaecologist Dr Jennifer Gunter, have pointed out that while characteristics such as body mass index may be relevant to endometriosis severity, this is not what the study actually measured. She wrote at the time: “I fail to understand how a small group of Italian doctors rating attractiveness of women with different stages of endometriosis contributes anything to medical science.
“Fertility Sterility should be ashamed they accepted it for publication,” she wrote, adding: “Objectifying women has no place in medicine. It is even more horrifying that such a publication comes from a department on OB/GYN.”
The journal did not issue an apology but published a letter from the authors on Tuesday requesting the article be withdrawn.
“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. Women’s respect is a priority for us, and we are extremely sorry for the discontent the publication originated,” the authors stated.
Dr Rebecca Szabo, an Australian obstetrician and gynaecologist and academic at the University of Melbourne, has been campaigning for an apology for this study for seven years. She told the Guardian she was “shocked” it had been retracted after the journal had defended it for so long but worried that by retracting it, the lessons from it would be lost.
“This non-apology, this retraction, seven years after many people had written to … [the authors and editors], with no comments from the editor, I think is cowardly.”
Szabo said she was disappointed the editorial board of Fertility and Sterility had not issued an apology or provided a justification of why they did not retract it earlier. She said there were systemic and cultural issues within healthcare and medicine that has led to studies like this one being conceived and published.
“The question is: how is it possible that [this study was] conceived? It was 2012, not 1912.
“This is a really significant journal and it’s a journal that primarily goes towards women’s health.”
She added that the time taken to retract the study is the average time it takes to be diagnosed with endometriosis.
Dr Kate Young, a public health researcher at Queensland University of Technology whose previous work has focused endometriosis, has been instrumental in bringing this study to the public’s attention. She said it was an example of studies that get published but do not actually help women and other people with the condition.
“That paper is a really good example of what happens when we do research about women but not for them. And that’s partly a reflection of the patriarchal society that we live in and also the way we’ve structured research and research funding.
“We really need better systems in place that come from the bottom up. We need research to be influenced by the people who it is for.”
Sylvia Freedman, co-founder of the patient advocacy group EndoActive, said she was glad the study had finally been retracted.
“When I first read the study and saw it was by Vercellini, I thought I must be reading it wrong, since he is such a powerful and respected endometriosis specialist. But it would appear that time, money and energy has been put into a study trying to draw a connection between rectovaginal endometriosis and the way a woman looks, from the perspective of others.
“It’s disgusting, it makes me sick. We’re here begging for research funds. Endometriosis is so grossly underfunded globally compared with what it costs the economy, and to know precious money has been put to a study like this is heartbreaking.”
A 2019 study for EndoActive by ErnstYoung found that endometriosis costs the Australian economy $7.4bn annually. In 2018 and 2019, $15m was announced by the Australian government for endometriosis research funding as part of the national action plan for endometriosis.
Lesley Freeman, fellow co-founder of EndoActive, told the Guardian: ‘‘When I read the title of this paper, I felt physically ill … And it’s taken eight years for this disgusting paper to be retracted?”
Last week, a study that was published in the Journal of Vascular Surgery that looked at the “prevalence of unprofessional social media content among young vascular surgeons” was retracted after criticism that it was sexist in its methodology and conclusions. The authors and journal issued an apology.