The IFTF Blog
Screening the Genes of Embryos
At the beginning of the year, Duke professor David Goldstein offered what he described as a "confident but uncomfortable prediction" that by 2020, if advances in genetics continue as he expects, they are "bound to substantially increase interest in embryonic and other screening programmes." About a month later, a new company, Counsyl, launched a first-of-its-kind direct-to-consumer testing service aimed at telling couples, based on screening each member of a couple for recessive mutations that could put potential offspring at risk for certain hereditary diseases, offering an early signal of Goldstein's forecast, as well as a not so subtle reminder that, as I've heard some colleagues say, sometimes the future gets here faster than we expect.
Counsyl doesn't actually offer screenings or tests of embryos, and while they describe their test as a "universal" genetic test, they only screen for about 100 or so diseases--only screening for diseases that are caused by two recessive mutations in a single gene. The tests are effectively checking to see if each member of a couple are recessive carriers of the mutations--which, if so, would put infants at a 1-in-4 risk of inheriting the disease.
As the New York Times notes, though the tests aren't terribly robust, and only screens for diseases, and, for that matter, is still in its infancy, the company is already the subject of some criticism.
But some experts foresee new issues. So many people would be carriers for at least one disease that genetic counselors might be overloaded. Some critics, meanwhile, say such testing is a step toward designer babies, in which parents choose the traits of their children. There is even some concern that having fewer babies born with these diseases will mean a reduced effort to develop treatments.
This fear of "designer babies" is what Goldstein--and others--have pointed to with regards to genetic testing. From the distance of several years and theoretical possibilities, the concept sounds very unsettling. But I'm not sure that most of us will look at screenings that way in a decade.
Take another example from the history of fertility treatments. In his excellent book The Genius Factory: The Curious History of the Nobel Prize Winning Sperm Bank, David Plotz shows that in the very early days of sperm banks, the idea of using sperm donors raised the same sorts of fears.
As Plotz notes, the concept of a Nobel Prize sperm bank--officially called the Repository for Germinal Choice--was "Part altruism, part social engineering, part science experiment" and very, very controversial. Women would be able to choose donors who were intelligent, accomplished, and so on--raising all sorts of serious problems and concerns for parents who just wanted to have normal children in the traditional manner, and for the kids of these designed births.
The Repository for Germinal Choice fell apart under the weight of controversy and some other problems. But the curious thing was this: Over the years, it became more and more socially acceptable for women, when using sperm donors, to choose their donors based on real-world accomplishments and physical traits. Which is to say, choosing donors sounded controversial and repugnant--until one had to make her own choice, and realized she didn't want to wind up with a mediocre father for her children.
It's this slow shift in perceptions that I think informs Goldstein's forecast. Nobody likes the idea, in theory, of designing newborns. But in practice, most people are far more likely to be afraid of having a baby with a significant disease, and far more excited about having an exceptional kid.
If genetic testing can offer that sort of information--and it's a big, big if--I would guess, like Goldstein, that genetic testing for embryos that sounds controversial now will seem relatively routine in a few years. And like Goldstein, I would suggest that, in light of this potential, we should begin thinking about the "practical and ethical" implications of the potential of these screenings before we find that they've become commonplace without any significant thought or debate.