Principal Investigator: Erik Parens
Funder: National Endowment for the Humanities

A child with a noticeable facial anomaly, short limbs due to achondroplasia, unusual-looking genitals, or some other norm-challenging feature may suffer as a result of social expectations and prejudices. In an effort to reduce psychosocial suffering, physicians sometimes offer surgical procedures explicitly designed to “normalize” a child’s appearance. Some people born with norm-challenging features, however, have begun to argue that they are not “broken” and that using surgery to “fix” them is unethical. The working group of this project, which included clinicians, medical humanities scholars, legal experts, patient advocates, parents, and adults who as children were patients, investigated the debate about appearance-normalizing surgeries and reached several conclusions. Three cases ground the exploration: surgery for children with ambiguous genitalia; limb-lengthening surgery for children with achondroplasia (dwarfism); and surgery for children with atypical faces. The project produced the following publications:

Erik Parens, ed., Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality (Johns Hopkins University Press, 2006).

Joel Frader et al., “Health Care Professionals and Intersex Conditions,” Archives of Pediatrics and Adolescent Medicine 158 (2004): 426-28.

Alice Dreger, One of Us: Conjoined Twins and the Future of Normal (Harvard University Press, 2004).