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introduction Thinking about Surgically Shaping Children erik parens This volume explores the ethical questions that arise when surgery is used to make children look more normal. It grows out of The Hastings Center’s Surgically Shaping Children project, which is, as it were, the child of two other Hastings Center projects I have had the privilege to direct. The first of those projects,on prenatal testing and disability rights,took up the ethical questions that emerge when we selectively abort fetuses shown by prenatal genetic tests to carry disabling traits (Parens and Asch 2000). More specifically, that project (funded by the Ethical, Legal, and Social Implications of the Human Genome Project [ELSI] program at the National Institutes of Health) investigated the disability community ’s critique of such testing. While the project gave me a deep appreciation of that critique, it also gave me an appreciation of just how heterogeneous are the disabling conditions we can test for (from Tay Sachs to extra fingers)—and of just how difficult it can be to make useful generalizations about “disabling conditions.” In addition to making me want to continue to engage the disability community’s arguments , that project made me think it would help to narrow the focus and begin to investigate particular cases. Thus, our Surgically Shaping Children project (funded by the National Endowment for the Humanities) took up three cases, which are themselves heterogeneous. The first case involves surgeries to make children’s ambiguous or atypical genitalia look more normal; many adults with such atypical anatomies refer to themselves as intersexed. The second involves surgeries to lengthen the legs of children who have achondroplasia; adults with achondroplasia refer to themselves as dwarfs or Little People. Originally, I thought that our third case would consider surgeries to make the features of children with Down syndrome look more normal.Because it turns out that fewer and fewer of those surgeries are being done,however,we decided to concentrate on another set of craniofacial surgeries: those done on cleft lips and palates. Though I didn’t know it at the time, as I explain below, going from a controversial to a non- controversial class of surgeries would turn out to complicate—and thereby deepen— our reflections. For that change in course, I am deeply indebted to Dr.Wendy Mouradian , a member of our project’s working group. The other “parent” of the Surgically Shaping Children project was our Enhancing Human Traits project (also funded by the National Endowment for the Humanities), which explored the ethical debates that surround efforts to use medical technologies to improve human traits and capacities (Parens 1998). Surgical breast enlargement was one of the classic examples circulating in the background of the project. Another was the use of Prozac to improve normal moods—or, in Peter Kramer’s famous phrase, to make some people feel “better than well” (Kramer 1993). Indeed, we often spoke in that project as if the central question was, What are the ethical costs of various efforts to make us better than normal? But that formulation of the project’s central question, with images of shallow and greedy social climbers in the background, failed to identify what I now see as that project’s primary concern. That concern was not about persons pursuing frivolous ends or unfair social advantages , as real and important as those concerns may be. It was about pressures on persons to transform the bodies—and thereby the selves—they were thrown into the world with. From that angle, giving tall girls hormones to slow their growth was and is every bit as worrisome as giving short boys hormones to enhance theirs. In one formulation , the worry was about individuals becoming different from who they really were—or, as some would put it, “inauthentic.”1 As Carl Elliott saw before I did (Elliott 2003), my fundamental concern was about how we are using these technologies to transform human identities. The Surgically Shaping Children project brings that concern about using technology to transform identities front and center. We weren’t talking about advantageseeking social climbers. Instead, we were talking about parents and children, who hoped that more normal appearance would improve psychosocial functioning. They hoped that transforming children’s bodies could transform how those children are experienced by, and thus experience, others and the world. Moreover, insofar as this project was about children, it forced me and the working group to face one of the deep tensions at...

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