On March 3 the cover story of the New York Daily News trumpeted a simple imperative to “Design Your Baby.” The screaming headline related to a service that would try to allow parents to choose their baby’s hair, eye and skin color. A day later the Fertility Institutes reconsidered. The organization made an “internal, self regulatory decision” to scrap the project because of “public perception” and the “apparent negative societal impacts involved,” it noted in a statement.
The change of heart will do nothing to stymie the dawning era of what the article called “Build-A-Bear” babies. The use (and abuse) of advanced fertility technology that evokes fears of Gattaca, Brave New World and, of course, the Nazis’ quest for a blonde, blue-eyed race of Aryans continues apace. A recent survey found that about 10 percent of a group who went for genetic counseling in New York City expressed interest in screening for tall stature and that some 13 percent said they would be willing to test for superior intelligence. The Fertility Institutes is still building the foundation for a nascent dial-a-trait catalogue: it routinely accepts clients who wish to select the sex of their child.
The decision to scrap the designer baby service came just a few weeks after Nadya Suleman, a single, unemployed California mother living on food stamps, gained notoriety after giving birth to octuplets through in vitro fertilization. The Suleman brouhaha showed that even routine uses of reproductive technologies can be fraught with issues that bear on ethics and patient safety.
The preimplantation genetic diagnosis (PGD) technique used by the Fertility Institutes to test embryos before implantation in the womb has enabled thousands of parents to avoid passing on serious genetic diseases to their offspring. Yet fertility specialists are doing more than tiptoeing into a new era in which medical necessity is not the only impetus for seeking help. In the U.S., no binding rules deter a private clinic from offering a menu of traits or from implanting a woman with a collection of embryos. Physicians who may receive more than $10,000 for a procedure serve as the sole arbiters of a series of thorny ethical, safety and social welfare questions. The 33-year-old Suleman already had six children, and her physician implanted her with six embryos, two of which split into twins. American Society for Reproductive Medicine (ASRM) voluntary guidelines suggest that, under normal circumstances, no more than two embryos be transferred to a woman younger than 35 because of the risk of complications.
Of course, any office consultation with a fertility doctor will likely neglect the nuances of more encompassing ethical dilemmas. Should parents be allowed to pick embryos for specific tissue types so that their new baby can serve as a donor for an ailing sibling? For that matter, should a deaf parent who embraces his or her condition be permitted to select an embryo apt to produce a child unable to hear? Finally, will selection of traits perceived to be desirable end up diminishing variability within the gene pool, the raw material of natural selection?
In the wake of the octuplets’ birth, some legislators made hasty bids to enact regulation at the state level—and one bill was drafted with the help of antiabortion advocates. The intricacies of regulating fertility technology requires more careful consideration that can only come with a measure of federal guidance. As part of the push toward health care reform, the Obama administration should carefully inspect the British model.
Since 1991 the U.K.’s Human Fertilization and Embryology Authority (HFEA) has made rules for in vitro fertilization and any type of embryo manipulation. The HFEA licenses clinics and regulates research: it limits the number of embryos implanted and prohibits sex selection for nonmedical reasons, but it is not always overly restrictive. It did not object to using PGD to pick an embryo that led to the birth of a girl in January who lacked the genes that would have predisposed her to breast cancer later in life.
HFEA may not serve as a precise template for a U.S. regulatory body. But a close look at nearly two decades of licensing a set of reproductive technologies by the country that brought us the first test-tube baby may build a better framework than reliance on the good faith of physicians who confront an inherent conflict of interest.
This story was originally published with the title "Designing Rules for Designer Babies"
When the world looks back at how the "designer babies" trend began, they will see an innocent start. A Philadelphia couple who had gone through the physical and emotional marathon of trying to have a child turned to intra-uterine insemination and ultimately IVF. Like any rational people, they wanted to do everything to increase their chances that IVF would work. In this case, they sent the embryos to an Oxford lab, which ran a kind of minimal DNA test to see which embryos would be most likely to take.
It's hard to deny this Philadelphia couple the chance to be parents. David Levy and Marybeth Scheidts look very wholesome in their family photo holding their son Connor, born in May 2013. They clearly weren't trying to select the embryo with their preferred hair or eye color or other physical or mental traits. In fact, they didn't even have a full DNA analysis done, only a scan of the chromosomes, the structures that hold genes. This isn't Brave New World-esque test tube babies. It's a traditional family – with the best of modern medicine.
But that's just it, not every couple will be like that.
Dagan Wells, the fertility specialist at Oxford University, told the Guardian:
IVF is still expensive and uncomfortable with no guarantee of a baby at the end. I can't imagine many people wanting to go through the strains of IVF for something trivial.
Wells has an entirely too charitable view of humanity. Perhaps he missed the news about the mother who loved tanning so much that she did it until she turned into a weird chestnut color and tried to bring her daughter along as well. Or the people who not only get plastic surgery for themselves, but also for their pets.
People do bizarre things to obtain a certain look, even if the most of us would say it's gross.
I can't imagine it will be long before some parents do ask the lab to give them a longer rundown of the genetic possibilities of each embryo. It will likely be a progression from just wanting a child, to wanting one less likely to get certain diseases, to wanting one more likely to have traits associated with being taller or more artistic or athletic. From there, it's not to hard to imagine something akin to the Subway sandwich line where you select different traits a la carte. And that's before anyone talks about the endless possibilities of combing DNA from more than two people.
There's a case to be made that genetic selection is just the next step in evolution. Who hasn't wanted to be a little bit taller or faster or smarter at some point? Who wouldn't want to give their child every advantage possible in an increasingly competitive world? And frankly, in the US, we've already done this kind of "designer baby" breeding for many crops and animals raised to be consumed. We have bred them and genetically modified them to be what we want (or, better said, what we think we want). Is it really that different to do the same for humans?
For me, the answer is still yes, it is different for humans. Beyond the moral questions of "playing God", there are the practical ones. If this procedure takes off, it will only further exacerbate our world of haves and have nots. IVF is expensive. Many insurance providers in the US don't cover it. Even if the cost of this extra genetic screening comes down, the overall procedure is probably going to be out of reach for many Americans, let alone other countries around the world.
Imagine a scenario at a future Olympics: is it legitimate to have a genetically designed person competing against those who are not? At the moment, it's a bit of luck who has the right body for certain sports. But in the future, those traits could be selected for and groomed from the womb.
And that's to say nothing of other traits people in wealthy families might select for, creating a kind of demi-god race that will be taller, healthier, probably better-looking by conventional standards and more likely to have certain mental smarts. If the rest of the world is struggling to catch up now, imagine how much further behind they will be. A good college education will be an afterthought.
I have known a number of people who have undergone IVF, often multiple times, and I wouldn't want to deny them a better chance at having it work out the first time around. But I have also known couples who couldn't afford IVF. They ended up going the adoption route. They didn't get to select their child, especially those who adopted via the government-run foster care system. They felt fortunate even to be able to adopt one, regardless of the emotional or physical issues the child had or the outward characteristics.
Of course, it's worth celebrating the birth of a child to two Philadelphia parents who might not otherwise have had a kid. But if we think the gap between the haves and have-nots is large now, just wait until this technology is used to pre-select characteristics for success.