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A Call to Update Standard of Care for Children With Differences in Sex Development

Nat Mulkey1, Carl G Streed2, Barbara M Chubak3

  • 1Recent recipient of MD degree from Boston University School of Medicine in Massachusetts.

AMA Journal of Ethics
|August 5, 2021
PubMed

Insights

Physicians debate care for children with differences in sex development (DSD). Recent DSD-LIFE Study data are examined to determine if they support deferring non-essential early surgical interventions for DSD patients.

Area of Science:

  • Pediatric endocrinology
  • Genetics
  • Medical ethics

Background:

  • Children with differences in sex development (DSD) face complex care decisions.
  • Past early surgical interventions for DSD have led to patient suffering.
  • Calls for deferral of non-essential DSD surgeries are increasing.

Purpose of the Study:

  • To evaluate recent data regarding the care of children with DSD.
  • To assess the extent to which new data support deferring surgical interventions for DSD.
  • To inform the ongoing debate on the standard of care for DSD.

Main Methods:

  • Review of recent data from the DSD-LIFE Study.
  • Analysis of long-term outcomes related to DSD interventions.
  • Consideration of ethical and legislative trends in DSD management.

Main Results:

  • The DSD-LIFE Study provides new insights into long-term DSD outcomes.
  • Data suggest potential harms from early, unnecessary surgical procedures.
  • Evidence regarding the benefits and risks of deferral is evolving.

Conclusions:

  • The standard of care for DSD involves interdisciplinary teams and parental input.
  • Hesitancy in full deferral is linked to a lack of comprehensive long-term data.
  • Mounting legislation indicates a societal shift towards caution in DSD interventions.

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