U.S. health care providers don’t know much about female genital cutting; UB medical students want to change that

BUFFALO, N.Y. – For more than a decade, a medical student group at the University at Buffalo has played a critical role documenting medical evidence of torture in immigrants seeking asylum. Knowledge of the work done by UB’s Human Rights Initiative (HRI) contributes to Buffalo’s reputation as a city where individuals persecuted in their home countries can access the medical documentation they need to pursue asylum in the U.S.

Now these students at the Jacobs School of Medicine and Biomedical Sciences at UB are working to educate providers — and their fellow classmates — about the medical and psychological consequences of female genital cutting (FGC) among those seeking asylum in Buffalo.

The effort comes at a time when an increase in immigration means that more physicians in the U.S. will encounter FGC, but none of the health care professions cover it in their training.

“Everyone lacks knowledge in this topic,” says Alyssa D. Reese of HRI, who will graduate with her MD from the Jacobs School later this month. “But as we see more refugees, we are going to see a lot more of it, especially people in primary care or those delivering babies.”

And if a provider hasn’t been educated about FGC, encountering their first patient with it could be overwhelming. “It could lead to a really poor therapeutic relationship,” she says.

Since her first year in medical school, Reese has been a member of HRI, working to improve knowledge of FGC. HRI has held conferences and grand rounds on FGC.

On April 12, at the Physicians for Human Rights National Student Program conference in Phoenix, Reese will present her FGC projects, including a systematic review of health care provider knowledge of FGC and HRI’s experience with gynecological exams for these clients. She is also developing a handbook about FGC for providers and medical students.

Taboo topic

“We talk about domestic violence and physical abuse, but this is a taboo topic,” says Reese, who conducted the research for her honors thesis.

“As medical students, we are responsible for learning about taboo topics so that we can talk about them in a trauma-informed way and provide trauma-informed care to our patients.”

FGC has been illegal in the U.S. since 1996 and is internationally condemned by the World Health Organization and the United Nations as a human rights violation. Reese knew about it from global advocacy classes she took as an undergraduate at UB.

“But it wasn’t until I heard these stories from the women who experienced it, where it becomes an emotional, raw connection with them,” she says. “From a medical point of view, it’s obviously traumatic and can interfere with intercourse and childbirth, but then you hear about the psychological impacts. Every part of their life can be impacted.”

More than 200 million women

FGC involves the forced partial or total removal of the external genitals of girls and women for religious, cultural or other nonmedical reasons.

The procedure is done throughout the world, but primarily in sub-Saharan Africa, the Middle East and Asia. It has been performed on more than 200 million women living today; it is a leading cause of death among girls and women in those regions.

Performed on females as young as infants and up through the teen years or later by non-medical individuals — often close female relatives — without anesthesia, FGC is seen in the cultures that practice it as a kind of “women’s rite.” It is based on false beliefs that the procedure will increase the male partner’s pleasure, make the girl more desirable for marriage, increase hygiene, preserve virginity or promote fertility.

There is anecdotal evidence that some American girls whose parents are from cultures that practice FGC may be forced to undergo the procedure when they travel to those regions on family vacations.

Acute medical consequences include severe pain, bleeding and loss of consciousness; chronic consequences include urinary tract infections, pain with sex, inability to have intercourse, infertility, pain during menses, clitoral neuroma and abnormal growth of neural and other tissue, in addition to obstetric complications. And because FGC is typically done in non-sterile conditions, there is the risk of serious, even life-threatening, infection.

In some instances, the physical condition can be surgically repaired but the procedure can also cause lifelong psychological consequences, from depression to anxiety and post-traumatic stress disorder.

Affidavits for asylum seekers

HRI collaborates with local groups like Journey’s End Refugee Services, Jericho Road Community Health Center, VIVE and the Erie County Bar Association Volunteer Lawyers Project.

Since 2014, HRI has completed over 250 affidavits based on forensic evaluations for asylum seekers. It began performing gynecological forensic evaluations for survivors of FGC in 2017 and since then has evaluated 15 women who have undergone FGC.

Before meeting with clients, students must attend a scribe training session. They learn about practicing cultural humility when talking to these individuals and how to use trauma-informed language, care and education with them. They learn how to work effectively with an interpreter and that the client may be shackled or come with a guard if they are being held in a detention center.

During client evaluations, under the supervision of UB and Western New York physician volunteers, students act as medical scribes and help write the affidavits that are presented in court.

“These affidavits really do make a difference to our clients,” says Adela Smehlik, a Buffalo-based immigration attorney who addressed the students during a recent HRI conference. “I want you to know how amazing HRI is and how invaluable the group is to the work that we do.”

Once the lawyer requests a forensic evaluation, the client is scheduled for a psychological, gynecologic and/or physical exam performed by one or two clinicians and documented by the medical students. The students write the affidavit for the court, including the chronology of the client’s story, clinical presentation and diagnoses. Clinicians may then be called as an expert witness to testify.

The affidavits that HRI prepares for women who have undergone FGC greatly increase their prospects for asylum.

Witnessing resilience

The HRI students and physicians say it can be hard to communicate how rewarding it is to engage in this work, which can improve the life of someone who has gone through unimaginable pain and despair. 

“The clients make an imprint on you, not because of the violence they endured but because of their resilience,” says Kim Griswold, MD, HRI founder, faculty adviser and professor emerita of family medicine and psychiatry in the Jacobs School.

Because they must remain impartial, neither the physicians nor the students can stay in touch with clients once their case has gone to court. But the students say the power of bearing witness to people who have lived through such extraordinary difficulties and can now begin to heal is, in many ways, a life-changing experience. Some say it was among the most meaningful experiences they’ve had in medical school.

“I have grown so much as a future physician talking to these people,” Reese says. “They’re survivors of torture. I am so grateful to hear their stories of resilience. Witnessing their resilience gives me resilience.”