Ellen K. Feder - Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine

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R ecall the pair of studies presented by Suzanne Kessler in her 1998 book, Lessons from the Intersexed, discussed in chapter 2. In one study, college students were asked to imagine that they had been born with an atypical sex anatomy and to consider what they would want their parents to decide on their behalf. in the other study, students were asked to imagine that they had a child born with atypical sex and to consider what they would decide for their children. in their responses to the first study, students strongly opposed surgery on their own behalf while nearly 100 percent of students participating in the second study would support normalizing surgery for their own children.

On the one hand, it is easy to make sense of these studies. Responses to the question posed in the first study confirm how unappealing the prospect of compromising erotic response for the sake of cosmetic enhancement appears to be. responses to the question in the second study support the idea that as parents we want what is best for our children and, if it is possible, to spare children stigma, particularly that associated with atypical sex. Certainly, this study seems to say, we parents should do what we can to defend our children against any harm we imagine could result from such a difference. But, on the other hand, even if we can understand the students responses to the individual studies, bringing them together demands, once more, that we ask how it can be that parents would consent to procedures on behalf of their children that they would decline for themselves.

Beginning with an examination of parents own derivative dependency as parents (Kittay 1999, 42), my aim throughout this project has been to gain a better appreciation of the conditions that make surgical normalization appear, from a parental position, to be the goodeven the obviouschoice. If those imagining themselves as parents in Kesslers study make the same choices as those parents who decades ago agreed to normalizing surgery for their children, and those parents who still ask foror even demandsuch surgeries, this near universal impulse seems to suggest that the choice is perceived to be required in order to fulfill parents fundamental duty to protect their children.

If, from the perspective of those who imagine themselves as candidates for such surgery (as well as from those who actually underwent such surgeries as infants or young children), this choice does not seem at all obvious but, on the contrary, wrong and a violation, then we must understand the ethical challenge presented here to involve closing the distance between these two positions that are not only far apart but also fundamentally different.1 The commitments each entail conflict in ways that should signal the presence of a greater risk than has been acknowledged by proponents of normalizing interventions for DSD.

Those supporting the current standard of care identify a stalemate resulting from critics challenges to both the standard of care and physicians and parents support of that standard (e.g., Warne and Bhatia 2006, 183). (Though, given what we know from the twentieth-century history of the medical treatment of atypical sex anatomies, it appears that checkmate more accurately describes the state of the conflict.) They recognize the irreconcilability of the two positions as most understand themprecisely in the terms in which Kesslers studies were designed. Instead of seeing in the difference between the positions of parents and children the difficult challenge of how to bridge the gap between them, proponents of the standard of care seem to see in critics demands an unreasonable and irresponsible call that parents abandon their parental role by adopting the perspective of the child. I want to begin by proposing that we identify proponents defense of the standard as a recognition that parents practice of their duties as parents often involves just the kind of conflict illustrated by Kesslers studies and that parents firm, insistent, and loving occupation of this position vis-a-vis their children requires parents to maintain their position as parents, that they not switch sides.

Let me be clear that I do not think that critics of the standard of care are asking parents to abandon their positions as parents. It has been difficult to articulate criticism of the standard of care in ways that are not susceptible to proponents characterization of the alternative to normalizing surgery as doing nothing. To many pediatric specialists in DSD care, and to the parents they advise, doing nothing is regarded as a poor alternative to intervention aimed at normalizing a childs atypical anatomy. Misunderstandings of critics demands have so far served to reinforce the standard of care that usually results in surgical normalization, even if in more refined and seemingly satisfactory ways.

My aim in this chapter is to propose an approach to closing the distance between the positions of the parent and the child that takes seriously the integrity of each position and the commitments and duties particular to them. At the center of my analysis are the recommendations of the Bioethics and Intersex Group, a subgroup of the German Network DSD/Intersex that aims to balance what appear to be the conflicting commitments of parents and children. The group outlines compelling reasons to exercise caution in consenting to normalizing surgery. Ultimately, however, the group argues that parental rights to make decisions on behalf of their minor children must be respected; parents rights, they argue, are constitutive of the human right to familial privacy.

Appearing to set aside the relevance of the principle of autonomy in medical decision making in cases of DSD, the Bioethics and Intersex Group effectively relocates the doctrine of respect for autonomy from the individual, to the family. However, my interest in the statement by the Bioethics and Intersex Group is not based on an interest in the issue of autonomy in the narrower ways it is taken up in contemporary bioethical discussions as a matter of how to ensure that patients are able to make informed decisions regarding their health care.2 instead, i am concerned with how the groups focus on autonomyapplied in their analysis to families rather than individualsdistorts the notion of parental duties the group takes to be threatened by criticisms of the standard of care.

I think most would agree that parents of children with ambiguous genitalia who agree to, or even insist upon, normalizing surgery do so because they seek above all to protect their children, a duty that familial privacy is intended to safeguard. The parents I call Sonja and Elias, parents of a girl with ambiguous genitalia born a year or two after the publication of the 2006 Consensus Statement, would no doubt agree. But as my discussion with them suggests, they would identify in the German groups analysis a fundamental misunderstanding of the characterization of this duty, perhaps better understood in ethical terms as a virtue.3

In Kantian terms, duties are those acts the moral law obligates us to perform as rational beingsfor example, telling the truth or keeping our promises. We must tell the truth or keep our promises even if we have some interest in doing otherwise. Reading Kant, we might take moral action to be characterized by constraints on desires that pull us to act contrary to the moral law. Faced with a situation where duty commands that we keep a promise when we might want very much to do otherwise, Kants Groundwork of the Metaphysics of Morals provides a compelling standard for ethical judgment and action. The conflict between what we should do (reason) and what we desire (inclination) makes plain where moral obligation lies. When considering more complex or nuanced ethical action less readily characterized as fulfilling (or violating) the moral law, however, Kants moral philosophy may prove limiting at the outset, encouraging a sort of thinking that reduces ethical reflection to answering only the single question of which act is right and which is wrong.4 Even if we finally see the protection of our children as a dutyand consider the manner in which that protection is offered as important for how we conceive of this dutyKants moral philosophy does not provide effective means of building a picture of this duty and a guide to its fulfillment. Virtue ethics provides much better tools for these.