Ethics Guidelines for Intersex Conditions

The Hastings Center, explored ethical and social issues raised by surgery aimed at making children appear more typical. A multidisciplinary group considered medical, psychosocial, and ethical issues associated with surgical interventions in children born with atypical genitalia, commonly grouped as intersex.

Parents of newborns with intersex may believe that medical evalution will reveal their infants "true sex" and that genital surgery should proceed as soon as possible to avoid negative psychological sequelae. However, gender identity is not perfectly predicted by sex chromosomes or other physical parameters. Empirical evidence challenging predictions of positive outcomes from "cosmetic" procedures were reviewed as was diminished sexual responsiveness associated with surgical procedures. The practice of shielding patients from details of their diagnosis and surgical treatment is purported to precipitate disruption of relationships with parents and health care professionals. The authors point out that guidance documents put forth by professional societies are not based on valid clinical investigations and that there exists substantial variability among different specialties. The following conclusions were reached.

1. A comprehensive assessment of actual clinical practice should be undertaken.
2. Current surgical procedures that normalize genital appearance, are not alone justified. Surgery does not assure that the individual will avoid being discriminated against.
3. Appearance-altering surgeries do not need to be performed urgently. Surgical expediency does not necessarily outweigh the psychosocial and ethical considerations of waiting until the patient can participate in decision-making.
4. Immediately following diagnosis families require comprehensive services, including access to mental health professionals with intersex expertise. Psychological support is essential.
5. To reduce the feelings of humiliation and shame, children should be informed of their differences in an age-appropriate manner.
6. Ethical practice demands rigorous follow-up studies focusing on well-being and quality of life. Retrospective studies should include those who have not had surgery and prospective studies should compare the outcomes of non-surgical alternatives. Careful study design is crucial.
7. Clinicians need more intersex education including diagnosis, the development of gender, and sexual health.

In an accompanying commentary, Dr. Erica Eugster juxtaposes panel recommendations against the "real life challenges of providing compassionate and responsible care to infants with intersex conditions and their families." Eugster draws attention to the potential psychological risks of postponing genital surgery until the patient is mature enough to provide informed consent. She ponders the implications for parenting of denying the option of early surgery when the family, demands surgery. She concludes the ultimate decision should rest with the parents. To safeguard physical well-being of the child, Eugster reinforces a recent recommendation that genital surgery be undertaken in centers of excellence with intersex expertise.

Eugster welcomes the development of multidisciplinary teams, but recognizes its rare application. Her experience demonstrates that some families passively and/or actively reject counseling. The full integration of counseling services with a multidisciplinary team may temper such resistance. Regarding disclosure of medical information to the child, Eugster welcomes the guidelines for psychoeducational counseling but acknowledges that conflicts may be encountered when family members wish to shield the child from diagnostic details. Eugster enthusiastically endorses increased human sexuality education for clinicians but recommends a targeted strategy of focused training workshops that would serve the purpose of filling staffing gaps in multidisciplinary teams with intersex expertise.

Frader J, Alderson P, Asch A, Aspinall C, Davis D, Dreger A, Edwards J, Feder EK, Frank A, Hedley LA, Kittay E, Marsh J, Miller PS, Mouradian W, Nelson H, Parens E. Health care professionals and intersex conditions. Arch Pediatr Adolesc Med 2004;158:426-428.

Eugster EA. Reality vs recommendations in the care of infants with intersex conditions. Arch Pediatr Adolesc Med 2004;158:428-429.

First Editor’s Comment: These papers provide an excellent discussion on the ethical care of patients with intersex conditions. Both pieces underscore the value of outcome studies in guiding clinical practice, and yet the vision of multicenter, multidisciplinary research is largely unrealized. There are inherent limitations on research (eg randomized clinical trial is not an option in assessing the benefits of early versus later genital surgery). Studies examining the relative benefits of multidisciplinary teams versus the current standard of care would be compelling and feasible. The systemic constraints in ‘real life’ medicine represents even greater challenges. The intense effort required in creating and maintaining multidisciplinary teams serves as a disincentive. Creative problem solving is needed; we will not obtain answers to the most important questions if we restrict our inquiry to those issues that are the easiest to study.

David E. Sandberg, PhD

Second Editor’s Comment: The reader is encouraged to review the article "Discordant sexual identify in some genetic males with cloacal exstrophy assigned to female sex at birth",¹ as well as the accompanying commentaries by many experts regarding sex determination, differentiation, and idenity.² Altogether these articles should be carefully considered when caring for these patients. As Eugster stated, "The most important determinant of outcome may be an individual family's ability to accept and unconditionally love their child." ³

Fima Lifshitz, MD

References - (linked to )

1. Reiner WG, Gearhart JP. Discordant sexual identity in some genetic males with cloacal exstrophy assigned to female sex at birth.N Engl J Med 2004;350:333-341.
2. Migeon CJ, Berkovitz GD, Wisniewski AB. Sex determination, differentiation, and identity. N Engl J Med 2004;350:2204-2206.
3. Berenbaum SA. Management of children with intersex conditions: psychological and methodological perspectives. Growth Genetics Horm 2003:19:1-