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
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.
