Largest study of fertility patients shows concerns about embryo disposition

"This really turns our moral presumptions on their heads," says Anne Drapkin Lyerly, MD, an obstetrician/gynecologist and bioethicist at Duke, and lead investigator of the findings that appear online in Fertility & Sterility.

"Parents care very much about what happens to their embryos, but that doesn't mean they want them to become children. Our study shows that many feel they have to do what they can to prevent their embryo from becoming a child."

The survey of more than 1,000 fertility patients is the largest and only multi-site study to shed important light on the state of the nation's 500,000 frozen embryos currently in storage. It reveals previously unexplored concerns that patients have about their embryos, and it comes at a time when several states and even the federal government are attempting to enact legislation that would either assert an embryo is a person, allow abandoned embryos to be adopted by another couple, or allow unused embryos to become "wards of the state."

What to do with those unused embryos has also become a sticking point for providers, since they are held responsible for safe storage or disposition of apparently abandoned embryos.

Fresh embryos are used in more than 80% of fertility treatment cycles, but most patients also choose to freeze some embryos that were created but not implanted, to use as a possible backup. This means that extra embryos often remain after treatment is completed. Previous studies have found that when childbearing is complete, as many as 70 percent of patients put off for five years -- or more -- the decision of what to do with those frozen embryos, even while they continue to pay annual storage fees. In Lyerly's study, 20 percent of the patients who had completed childbearing indicated they were likely to freeze their embryos "forever."

The lack of acceptable options fuels patients' reluctance to make a decision. "Either the options they prefer aren't available or they are unacceptable," explains Lyerly.

In the survey, the researchers presented four embryo disposition options: thawing and discarding; reproductive donation; indefinite freezing; and donation for research. The majority were unlikely to choose any of these options except for one: research donation.

In a previous paper published in Science, Lyerly reported that 60 percent would be likely to donate unused embryos for stem cell research, an option not readily available. But even if federal policies on funding stem cell research change, Lyerly says that doesn't solve patients' conundrum.

"For many of these patients, the need to make a decision about disposing these embryos is not discussed up front. Understandably, fertility patients have hard times thinking about destroying their embryos when they are emotionally and financially invested in trying to make a baby," she says.

The conundrum arises when reproductive goals change without a renewed discussion about what to do with the embryos that have been stored. "Many centers don't make available all the options for disposition," Lyerly says. "Even in places where embryo research is not conducted, it's possible that embryos can be transferred to another center, yet this might not be discussed."

Two methods that were considered somewhat acceptable by about 20 percent of the fertility patients were placement of embryos in a woman's body at an infertile time, and the idea of a ritual disposal ceremony. Yet, Lyerly says these alternatives are rarely offered to patients even though "these may be the answers to many patients' desires as they allow the embryos to pass in a way that seems most respectful to them."

By bringing fertility patients' concerns to the forefront, Lyerly hopes the next step will be the development of clinical guidelines and ongoing informed consent processes for patients at various stages of fertility treatment. She also hopes it will encourage more detailed disclosure about the available disposition options and facilitate broad availability of disposition decisions that are morally acceptable to the majority of fertility patients.

Source: Duke University Medical Center