Fertility Preservation for Those with Differences of Sex Development 

Children with differences of sex development may face infertility later in life. Preserving their organs early increases their chances for fertility.

The disorder, also known as DSD, may manifest itself in several ways, whether it is androgen insensitivity syndrome, ambiguous genitalia, congenital adrenal hyperplasia or others. Parents and doctors of these children must make tough decisions with serious consequences. For instance, doctors may wish to remove individuals with DSD’s sexual organs to prevent potential germ cell cancer. Parents also may be involved in “deciding” a gender that will impact their child for the rest of his or her life.

Research About Fertility And Differences in Sex Development

Research indicates that the earlier the removal of ovaries or testes in children with DSD, the higher the chances of their future fertility. In these cases, storage in very cold temperatures preserves the tissue for later use. Since completing the procedure for pre-pubertal patients requires not-yet-developed germ cell maturing technology, some worry that it offers only false hope. And there are other concerns.

According to Courtney Finlayson, MD, of Stanley Manne Children’s Research Institute at Anne and Robert H. Lurie Children’s Hospital of Chicago, the crucial timing of the procedure creates a predicament. “If we wait until the age of majority when the patient can give consent, we might miss the opportunity for fertility preservation,” she says. “And yet we might want to delay the surgery since we also want to take into account a person’s sense of self as a man or woman and autonomous decision making. It is a delicate balance.”

Cost and Insurance

Cost concerns those with DSD as well, because not only can fertility preservation run anywhere from thousands to ten thousands of dollars, it is also often considered elective surgery by insurance companies.

Finlayson continues, “We can make an argument that fertility preservation in children with DSD should be covered by insurance since DSD treatment can lead to infertility, which can result in serious psychological distress.” She also worries that insurance’s refusal to cover these procedures may prevent those with DSD from preserving their fertility.

Ethical Considerations

By removing the sex organs and thus assigning a gender so early, one major concern is that people with differences of sex development may develop gender dysphoria later in life. Take, for instance, someone who was assigned male but identifies female; it may cause them emotional distress to preserve sperm. The high levels of estrogen or testosterone administered to patients undergoing fertility preservation may also permanently cause physical changes.

Some people hotly debate the genetic implications of the procedure for DSD patients. Certain ethicists, concerned about passing on DSD to the next generation, ask if it is responsible for people with genetic disorders or diseases to reproduce. Proponents argue that many people with disorders live healthy and productive lives. And then, there are a number of those with DSD who don’t want their condition to be called a disorder or disease at all. Pre-implantation screenings of the embryos may solve most of the genetic concerns.

As Finlayson says, this is not a clear-cut issue.

“Fertility-related care for children with DSD is in its infancy. We must carefully consider the unique ethical issues that fertility preservation presents in this population.”