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
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.
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?
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
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
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
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