Cambridge Quarterly of Healthcare Ethics



SPECIAL SECTION: ETHICAL LIMITS IN HUMAN SUBJECTS RESEARCH

Ethical Dilemmas in Retrospective Studies on Genital Surgery in the Treatment of Intersexual Infants


SHARON  SYTSMA  a1
a1 Sharon Sytsma, Ph.D., is Associate Professor of Philosophy at Northern Illinois University in DeKalb and has served as Chair of the Ethics Subcommittee of the North America Task Force on Intersexuality

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Intersexual infants and infants with other genital abnormalities often receive genital surgery for sex assignment or for normalizing purposes. The wisdom and beneficence of these practices have been questioned by intersexual individuals, support groups, some doctors, and the media. Because the practices have been developed without long-term studies to evaluate them, pediatric urologists and parents of such children must face decisions with very little guidance from empirical support. In the face of ignorance about what is really the best medical response to intersexuality or genital abnormalities, some have argued for a moratorium on infant genital surgery until empirical studies are available. The urgent need for retrospective studies is now being recognized in medical journals. Because genital surgery may be appropriate and beneficent in some of these conditions, or in some degrees of these conditions, but not in others, retrospective studies must be devised to examine the degree of success of surgery for each of these conditions, or levels thereof.



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