Ethical issues in decision-making for infants with disorders of sex development

Area of Science:

• Medical Ethics
• Pediatric Surgery
• Endocrinology

Background:

• Historically, early cosmetic genitoplasty was standard for infants with disorders of sex development (DSD).
• This practice was based on the presumed best interests of the child.
• Emerging data challenge the benefits and highlight potential harms of early intervention.

Purpose of the Study:

• To re-evaluate the ethical considerations of early cosmetic genitoplasty in infants with DSD.
• To emphasize the importance of a child's right to an open future in medical decision-making.
• To advocate for delayed intervention until the child can participate in decisions.

Main Methods:

• Ethical analysis of current medical practices regarding DSD.
• Review of emerging clinical data on genitoplasty outcomes.
• Application of the principle of the child's right to an open future.

Main Results:

• The 'best interests' standard is insufficient when there's controversy regarding DSD interventions.
• Early cosmetic genitoplasty may be detrimental, not beneficial, to the child.
• Delaying surgery enhances the child's future autonomy and decision-making capacity.

Conclusions:

• Cosmetic genitoplasty for DSD is ethically justifiable only when medically indicated (e.g., for urinary function).
• Respecting the child's right to an open future necessitates delaying elective surgeries.
• Further research and societal education are crucial to reduce stigma for individuals with DSD.