Case study: informed consent and management of DSD

Parents made decisions on the basis of incomplete or biased information.

In previous articles, I said information given to parents of children with differences of sex development is often inadequate to meet legal requirements of informed consent.

In giving workshops and private consultations with clinicians, I often hear from physicians who are uncertain about what to tell parents of children with differences in sex development (DSD) in specific situations. Breakdowns in communication can leave providers exposed to considerable legal liability, particularly if the parents or patient come to regret the decision.

Although medical malpractice is often understood as a failure to meet standards of care, it also includes failure to provide adequate information for informed consent. Patients — or in this case, parents — cannot give legally valid consent without all of the information relevant to their decision.

Anne Tamar-Mattis

To help clarify what information clinicians must provide, in coming months, I will present a series of articles illustrating the challenges of informed consent in the context of DSD treatment, with a focus on some of the most difficult decision points: gender assignment, genital surgery and disclosure of diagnosis.

I will use real-life examples taken from Katrina Karkazis’ interviews with doctors and parents in her recent book, Fixing Sex, to highlight some common problems with informed consent and explore strategies for improving the process. This month’s discussion, taken from an interview in Chapter 4 of Karkazis’ book, illustrates one such problem: parents making decisions on the basis of incomplete or biased information.

Incomplete information

Sara Finney (not real name) gave birth to an infant with ambiguous genitalia and mixed gonadal dysgenesis. At first, doctors said the child was a girl, but Sara and her husband, “Jim,” were unsure that this was correct. To them, the child’s genitals appeared closer to male. Genetic testing revealed that the baby’s chromosomal makeup was mosaic 45, XO/46, XY. On one side, the child had a testicle, and on the other, an immature streak gonad. Jim and Sara faced a decision about gender assignment.

First, we must look at the information that the parents received: Sara and Jim were told that the child could be a fully functioning male, but that it would require several surgeries to construct a functional penis. Furthermore, his penis would be small, and there was a 90% chance of testicular cancer if the doctors did not remove the gonads. If they chose to raise the child as a female, the Finneys were told there would only be one surgery to create a vagina and “all the stuff that comes with one” (Sara’s words). With estrogen and growth supplements, they would have a normal little girl. After considering this information, they decided to raise their child as a girl and agreed to feminizing genital surgery.

Now let’s consider what was not said. The statements above may have been accurate, but much information was left out. The child’s chromosomal makeup was not mentioned as part of this momentous decision. The Finneys were not told of the possible effect of androgen exposure in utero on gender identity development. They carried away the idea that raising their child as a girl would mean she would only need a single, simple surgery to function sexually. They did not learn that vaginoplasty is also a very complex procedure, which may require multiple surgeries and lead to complications such as stenosis, or that significant evidence exists that genital surgery may leave women with problems in sexual function and sensation.

Although the risk of testicular cancer weighed heavily in their decision, it is not clear that the parents understood their child would be infertile (or face cancer risk), regardless of gender assignment, and that as a girl, she would not have ovaries. Sarah and Jim did not have information about the long-term physical and psychological outcomes in children with the same condition, nor were they offered resources such as support groups for similarly situated parents. Furthermore, despite the uncertainty about gender assignment with this diagnosis, it does not seem that the parents were given the option of deferring or forgoing surgery.

Any of these omissions could be found relevant in court if the Finneys or their child later regret the decisions they made. Of course, it is possible that the physicians covered some of this information. This story comes from an interview with the parents, and self-reports about the informed consent process may not be accurate in every case. But it is significant that, if they heard this information, it was not presented in a way they could absorb. If parents do not understand significant aspects of a treatment plan, they may legitimately argue that they never would have consented had they known all the details. Clearly, a more comprehensive informed consent process would provide their doctors with some protection from liability.

Biased information

In this case, the Finney’s were not only presented with incomplete information, but they may have been inappropriately influenced by the manner in which their alternatives were presented. By excluding some information altogether while touting the benefits of one treatment option, these physicians may have stepped into ethical and legal hot water. It is clear in the story of Sara and Jim that the physicians were convinced that female gender assignment was the best option. In fact, one doctor scolded Sara for initially giving her child a boy’s name, and others later told Jim they had talked on the phone several times over the weekend about their concern that the parents would make the “wrong” decision.

This concern may have led the physicians to give an overly persuasive slant to the information they offered, providing support for a female gender assignment while leaving out information that may have supported a male gender assignment.

Offering incomplete or biased information to sway parents’ decisions is coercive and inappropriate. Of course, it is acceptable and often desirable for doctors to reveal their opinions about various treatment options. However, it is wise to identify opinions as such and to explain the reasoning behind them while offering complete factual information.

Without all of the relevant information about the pros and cons of the recommended treatment, as well as alternatives, parents cannot give truly informed consent. By providing as much information as possible without putting a “spin” on one option, physicians can better serve patients and parents while protecting themselves from future liability.

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

For more information:

• Karkazis K. Fixing Sex: Intersex, Medical Authority, and Lived Experience. Durham: Duke University Press; 2008.