Principal Investigator:Erik Parens

Funder:National Endowment for the Humanities

Purpose

Explore the ethical issues raised by, and make recommendations regarding, surgeries aimed at making children look more normal. 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.

Products

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

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

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

Background

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 Surgically Shaping Children Working Group, including clinicians, medical humanities scholars, legal experts, patient advocates, parents, and former (now grown) patients investigated the debate about appearance-normalizing surgeries and reached several conclusions.

Findings

• It is not possible to articulate a useful line between acceptable and unacceptable cases of appearance-normalizing surgeries: different operations have different anatomical targets (faces, genitalia, limbs); for medical reasons, different operations are best done at different stages in child development; and different operations entail very different levels of physiological risk and promise different levels of psychosocial benefit. Moreover, reasonable people hold different views about the consequences of living with a norm-challenging trait, the acceptability of norms of appearance, and the usefulness of criticizing them.
• Nonetheless, several steps should be taken as soon as possible to help children and parents facing decisions about appearance-normalizing surgical operations:
  • Unless there is good evidence to believe that surgery early in life serves the best interests of a child, that child, when older, should be fully involved in the process of deciding about surgical procedures, especially if elective. If it is not feasible to wait until the child has reached majority (the age for full, informed consent), assent must be sought whenever developmentally feasible, in accordance with the 1995 recommendations of the American Academy of Pediatrics (AAP).
  • Children and their families must receive psychosocially oriented multi-disciplinary care in order to understand and provide fully informed consent (and assent).
  • To give fully informed consent or assent for appearance-normalizing operations, families and children require help to understand what is known and unknown about the physical and psychological impacts of their conditions and about the outcomes of the proposed operations.
  • Additional and better outcomes studies must be performed if truly informed consent is to be possible.