Last month, 30-year-old Alicia Routh got an email from the fertility clinic where she had previously donated dozens of her eggs. The email was sent out to 40 donors whose eggs are frozen in test tubes at the Pacific Northwest Fertility clinic in Seattle.
“How are you Alicia?” the email began. “As you know, Pacific NW Fertility is always looking for the best ways to help a family have a healthy baby.”
It went on to describe a new genetic testing program. The clinic wanted all of its donors, “past and present,” to participate by sending in a sample of their saliva for DNA testing. In exchange, the clinic would send donors a gift card, the email said. “This is a very powerful tool that our patients can use to choose the best donor for them.”
Routh had donated eggs to Pacific Northwest three times. Her first experience was a “fresh donation” with a specific couple, a husband and wife who chose her based on her listed traits: dark hair, dark eyes, and a college education.
Last year, after the woman became pregnant with one of Routh’s fertilized eggs, the clinic asked her twice more to donate, and she agreed. Each time they extracted roughly 20 eggs from her ovaries, froze them, and stored them to be used by future couples who can’t conceive naturally. Potential recipients will be able to select Alicia’s eggs from a catalogue of dozens of options.
Routh had already received a DNA test to see whether she carries genetic variants for about 100 major diseases. The new GenePeeks test, however, will match her DNA with the specific genetic information from the father’s sperm to calculate their combined risk of producing a child with any of more than 450 genetic conditions. If her eggs were shown to have some risk in combination with the sperm, then the couple in question would not be offered her eggs as an option.
The new service, launched last week, has so far been used by one couple at Pacific Northwest.
The test comes with a tremendous promise: that couples can have babies with a drastically lowered risk of genetic disease. According to the founders of GenePeeks, the hope is to eventually eliminate the possibility that babies will be born with genetic diseases altogether.
But, with a price tag of just under $2,000 per test, some say that the company is overselling its potential to concerned potential parents with the extra money to spend. They say the company is selling the ability to make advanced predictions when we don’t really understand the genetic roots of most complex diseases.
Some critics also worry about where to draw the line on a technology whose aim is to let us choose what types of babies we want — or don’t want — to make. What constitutes a genetic defect?
“It certainly gives prospective parents more knowledge than is currently available,” Naomi Cahn, a law professor focusing on reproductive technologies at George Washington University, told BuzzFeed News. “But there’s this quest to search for the perfect baby, and there’s no such thing as a perfect baby.”
GenePeeks’ story began in 2008, just two days after Anne Morriss brought her newborn son home from the hospital.
That’s when she received a terrifying phone call from a researcher with the state of Massachusetts, which runs routine genetic tests on newborns to screen for rare genetic diseases. She was told to put the phone down immediately, and go check to see if her baby was still alive.
Her son had a rare metabolic condition, called MCADD deficiency, which prevents infants from being able to break down fats into energy. If she didn’t feed her son every few hours, around the clock, he would very quickly die.
Azeen Ghorayshi is a science reporter for BuzzFeed