'Fixing Sex' author's goal was to reflect all stakeholders

Treatments began changing in 90s

When Katrina Karkazis, PhD, MPH, began her research in 1997 for her dissertation on intersex patients — or patients born with features of both the female and male sex — she said when she told people what she was working on, the standard answer was "Huh? What's that?"

Today, that never happens, says this research scholar at the Stanford Center for Biomedical Ethics in Palo Alto, CA.

In 1997, there was "a huge amount of debate" on the topic of intersex patients. Activism on this topic began around 1993, so she says that by 1997, "things were kind of at a fever pitch, and by 2000, things were very much in crisis."

The trigger for the idea to complete her dissertation on intersex patients was an article that she had read by Suzanne Kessler on this topic in 1993.

"I never forgot that article that she wrote," Karkazis tells Medical Ethics Advisor. "And what I realized at the time was that no one had interviewed all of the stakeholders that were involved in thinking about care for these children.

"And I really felt like we couldn't understand what the debates were about if we didn't talk to the three primary groups — those are the parents, the adults who had been treated, and the clinicians who treat the children and work to help the parents."

News magazine programs and talk shows like Oprah Winfrey's have helped to increase public awareness of the issue, as have activists; in fact, media coverage like this was included in her field research on the topic.

The difficulty in writing about this topic was that Karkazis says she felt as if she was writing for all three groups of stakeholders.

"But there was no question that part of what I was doing in writing it was having a conversation with [physicians]," she explains. "Because in following the debate, things that I heard doctors say repeatedly — some of those things I wanted to question and think about in a more complicated way. And this was, in part, my way of doing it — through the pages of the book."

Although she says she can't imagine that a large number of physicians have read the book, Karkazis says she has received "fantastic feedback" from clinicians, who have told her that what she wrote was not easy to hear, but that they felt like she was "fair."

She says she knows that what she or some of the people she interviewed had to say would not be easy for some physicians to hear.

"But I never wanted to say it in a way that closed off someone's ability to hear it, and so, not to screech, not to use inflammatory language, but to really [reflect] all sides respectfully."

In the book, she reflects on the treatment protocol established in the 1950s by John Money and colleagues at Johns Hopkins University in Baltimore.

She writes, "Emphasizing thorough but swift clinical workups to determine the etiology, clinicians determine a sex for these infants, and surgeons then modify the infant's body, especially the genitals, to conform to the assigned sex."

Although "widely accepted" by physicians for four decades, this protocol changed "dramatically" in the 1990s, she writes.

"[Treatment] has definitely changed," she tells MEA. "And for 40 years, there were challenges to this treatment . . . but nothing that really took hold.

"My sense is from my work that if clinicians deviated from what [Money] wrote, they did it quietly," she explains. "They weren't publishing about it; they weren't necessarily telling others, but they certainly had doubts and questions."

In the mid-90s, activists — some including people who had been treated they now felt inappropriately as infants — began to openly challenge existing protocols. And then, the debate evolved to include those clinicians who had "been quietly rethinking care."

"So, in some cases, legal scholars, ethical scholars, people from other disciplines and also people from within medicine, started to sort of say, 'Wait a second; let's rethink this," she says. "As you can imagine when that happened, medicine was resistant."

Clinicians suggested that the only evidence against the standard surgery protocols was anecdotal and voiced by a "small minority of unhappy patients."

In about 2006, a new standard of care was initiated, which included, Karkazis says, "some new thinking on surgery, and a more conservative approach to surgery."

Also, she notes, there were improvements in what is referred to as patient-centered care, "which is really this idea that you need to be honest with patients, which hadn't been the case [historically]."

"Clinicians never meant poorly by being dishonest; they really felt it was protective — that this would just be so hard to deal with, and some of the information was so difficult, that wouldn't we be doing better by sparing them?" she explains. "We know now in medicine that honesty is the best policy."

In addition to the change in surgical protocols, a new consensus statement also suggested that intersex patients must have good psychosocial care. Even Money in the 1950s suggested this, but it has not happened, Karkazis says.

"I think there are a couple of reasons [why psychosocial care hasn't been provided]," she says. "…I think the belief that if we kept quiet about the conditions — the less you know, the better you are. That was part of it."

Today, there are still barriers to adequate psychosocial care, she says.

Reimbursement for providing that psychological care to intersex patients — and their parents — is one such barrier.

"That has to do with insurance and reimbursement codes," she explains. "The child is the patient, but the parents are the ones who need the initial support. There's just not a framework for it."

Another barrier has been the "idea that one needs specialized training in these conditions to be able to help families."

"I agree that that would be useful," Karkazis says. "But from my talking to parents and families, I think that some of the issues that they deal with are some that are true for parents with a child with any chronic condition, or birth defect, or any type of situation where the parents have to reimagine their child's life after birth."

In the end, her goal was to initiate dialogue on this topic.

"What I hoped [the book] would do was raise questions, and question marks about what might have been habit in terms of clinical practice, and say, 'Wait a second: why do I do this? Do I need to do it this way? Can I do it better? And what else do we need to know or study?"

Toward the goal of further discussion on the topic, Karkazis has helped co-found an organization to promote dialogue on intersex patients and their care. That organization is called Accord Alliance, which can be researched at www.accordalliance.org.

Reference

  1. Fixing Sex: Intersex, Medical Authority, and Lived Experience. Katrina Karkazis. Duke University Press, Durham, NC. 2008.

Source

  • Katrina Karzakis, PhD, MPH, research scholar, Stanford Center for Biomedical Ethics, Stanford University Medical School, Palo Alto, CA. E-mail: Karkazis@stanford.edu.