The medical gaze and children with DSD

A conversation with a group of medical residents.

I am married to a small town doctor, which means I have many friends among the residents and staff of our local hospital. Some of them take an interest in my work as an advocate for children with differences of sex development, and last week I was invited to give a talk to the family practice residency program.

Since these residents may see cases of DSD only rarely, I used the topic as an opportunity to open up a discussion about children, assent and parental consent that might lead to insights about their everyday practice, as well as increased sensitivity to the needs of patients they might encounter with DSD. Their responses were so thoughtful and empathetic that I want to share them with a wider audience.

Anne Tamar-Mattis

Consent and assent in pediatrics

We began our discussion with an overview of the American Academy of Pediatrics’ policy statement “Informed Consent, Parental Permission, and Assent in Pediatric Practice.” This brief document provides a summary of modern ethical and legal thinking about the roles of parents, patients and doctors in pediatric decision-making. Notably, it offers guidance on when providers should solicit young patients’ assent, or agreement, to treatment and when children should be allowed to exercise their emerging autonomy in different kinds of heath care decisions.

We then turned to a case study, based on a real situation, set in the community clinic of a fictitious teaching hospital. The child in the case study is an 8-year-old with a DSD being raised as a boy, who has come for his annual wellness exam. As the third-year resident, with first-year resident and medical student in tow, approaches the exam room, he overhears the child pleading tearfully with his mother to let him avoid the genital exam he has come to expect with these visits. The case study points out that there is some evidence to suggest that children with DSD who are exposed to excessive genital exams may suffer psychological harm.

I asked the residents to imagine they were the senior resident in the hypothetical situation — how would they respond?

Assent and the ethics of looking

We spent a little time discussing the medical necessity of the genital exam. My audience reminded me there could be situations where it would be necessary for the child’s health to do a genital exam. We agreed that more medical facts would be useful in determining the necessity and urgency of the exam. For the sake of discussion, however, we assumed that there was no indication of a pressing need for a genital exam.

“Does the AAP policy statement say anything that is relevant to this situation?” I asked.

After some shuffling of paper, one resident offered this quote: “A patient’s reluctance or refusal to assent should…carry considerable weight when the proposed intervention is not essential to his or her welfare and/or can be deferred without substantial risk.”

Perhaps, the young man suggested, it would not be ethical to proceed over the patient’s protest.

A second resident objected. “This was supposed to be a teaching hospital, after all. If we want to have doctors who are trained to manage DSD in the future, we have to allow residents to learn about these cases.”

“But what about training residents in sensitive patient care?” a third offered. “Maybe in a case like this it is more important to learn about respecting the patient’s privacy and autonomy than to learn what the genitals look like.”

Another suggested they could use existing photographs rather than exams for educational purposes. One questioned whether there was an element of voyeurism underlying the urge to find a justification for the exam. “Everyone wants to see an interesting case,” she said.

It seemed like a good time to step in. I shared with the group what adult intersex patients and disability activists have said about the practice some have termed “medical display.” It is described as the trauma and shame children have experienced in having to exhibit atypical parts of their bodies repeatedly in medical settings for the education of others, sometimes in front of large groups.

“Imagine being 8 years old,” I said, “and having to allow three strange adults to look closely at your genitals.” I looked around the room. What had been a lively debate had shifted suddenly to a stunned silence. They could imagine how that felt. It wasn’t how they wanted their patients to feel about them.

The medical gaze seems objective and benign to the doctor, I pointed out gently, but it may seem violating and humiliating to the patient, especially to a young patient with an atypical anatomy. There were thoughtful nods around the room.

Conversation turned to the idea that the patient might become compliant when the doctors enter. Would that make it ok to proceed with the exam, given what they had heard through the door?

“I might not have questioned that before,” a young woman admitted, “but now that I think about it, it might be hard for him to refuse.”

Another resident suggested that the situation presented an opportunity to educate both mother and child about when and how he can say “no” to adults — including doctors.

We moved on to other case studies, but something about this story stuck with Bob, a tall, affable third-year resident. He caught up with me as I walked out of the hospital.

“The conversation about this patient really got to me,” he said. “Actually, it made me a little sick to my stomach to realize what I’ve participated in.”

I nodded. Living with a doctor, I know there is not much an outsider can say in a moment of hindsight.

“I know it will make me see all my exams, especially with kids, in a different way,” he added.

I did not like making Bob feel bad. I wish there was a way he, and the others, could have learned this before they saw patients. But I am grateful they had the generosity of spirit to take a second look at practices they took for granted and to renew their commitment to seeing the patients’ perspective. Their patients will be the better for it.

Anne Tamar-Mattis, JD, is an Executive Director of Advocates for Informed Choice, Cotati, Calif. She welcomes responses to this article at director@aiclegal.org.

For more information:

• Committee on Bioethics. Pediatr. 1995;95:314-317.
• Koyama E. From Intersex to DSD: Towards a queer disability politics of gender. www.ipdx.org/articles/intersextodsd.html. Accessed May 21, 2009.