As 21st-century humans in an increasingly advanced society, we’ve grown accustomed to not only picking and choosing exactly what we want but also being able to obtain it pretty much on demand. Thanks to technology, we have an amount of control over our everyday lives that we never used to have before. So, shouldn’t that control apply to having babies, too? For people used to making carefully curated choices about how to live their daily lives, it can feel downright frightening to turn all that control over to something as out of our hands as nature.
What Actually is a “Designer Baby”?
“Designer baby” is a pejorative term used raise emotion and create fear. It can describe an embryo that has been screened for predetermined characteristics and then selected or rejected for implantation (during in vitro fertilization) based on those qualities, but it is not used among those in the fertility community, According to fertility specialist Kaylen Silverberg, MD, medical director of Texas Fertility Center, the term “designer baby” means different things to different people. It’s often thrown around in the context of making sperm donor selections that could benefit an unborn child later in life (like using sperm from someone who is 6’8” and hoping the child will earn a basketball scholarship when they’re a teenager). IVF essentially bypasses the natural process of reproduction by which sperm and egg meet in the uterus during sexual intercourse. According to a 2018 Pew Research Center survey, 33% of American adults reported using some type of fertility treatment or knowing someone who has. But fewer than 2% of all births in the U.S. are from IVF. This practice has been going on since cryobanks first opened up in the 1970s, but in the scientific community, a designer baby is one that has been selected, at the embryonic level during the IVF process, for or against certain traits. There are two reasons why someone may choose this type of screening:
They want to select the sex of their baby, i.e. choose to have a boy or girl, with the purpose of avoiding hereditary conditions that tend to appear only in males or females.They want to avoid giving birth to a baby with specific diseases or genetic conditions.
Reproductive medicine doctors and their staff assist families in obtaining this information, but that’s as far as they go. They don’t wade any further into the ethical or moral implications of embryo selection. “[Once it’s complete], we don’t tell patients not to transfer that embryo…that’s not our prerogative,” explains Silverberg. “But we give them the information so they have it in advance and can do research to be prepared, if that’s what they choose.” For example, Silverberg says, if a couple is told that an embryo contains genetic information consistent with Down syndrome, it’s ultimately their choice to transfer that embryo and, if pregnancy is achieved, prepare themselves to welcome a child with special needs.
How Is This Even Possible?
This technology is essentially an extension of existing IVF technology, Silverberg explains. When eggs are harvested from a prospective mother and then fertilized with sperm, the resulting embryos are genetically tested for their overall quality. “Right now, we can do two types of genetic testing of embryos: whole chromosome testing for things like trisomy abnormalities and Down syndrome, and single gene disorder testing [for things like sickle cell disease, cystic fibrosis, and muscular dystrophy],” Silverberg says. However, the field of genetics is expanding daily and soon technicians may begin regular screening for more complex genetic conditions. “Heart disease is a polygenic disease, meaning there’s no one gene that predicts it,” Silverberg says. “But we’ve identified certain combinations of genes that can lead to heart disease and we’ll be testing for those.” Scientists can also screen for several of the breast cancer genes. According to the National Cancer Institute, about 70% of people born with the BRCA1 and BRCA2 genes will develop breast cancer before the age of 70—and a parent who has one of the mutations has a 50% chance of passing it onto their offspring.
Who Is Using This Technology?
People struggling with repeated miscarriage or with a history of serious genetic disease may choose to use designer baby technology. Since selecting for and against specific genes or traits involves screening at the embryo stage of fetal development, it can only be done in a laboratory setting. As of right now, there is no way to identify cosmetic traits like the potential height, weight, hair, or eye color of an embryo—Silverberg said most people choose PGT to screen for genetic diseases. More than 100 conditions can be tested for in PGT, including sex-linked, chromosomal, and single-gene genetic disorders. (A full list of disorders is available through The Fertility Institutes.) Infertility rates also increase with age; it takes longer for women over 35 to become pregnant and they have higher rates of miscarriage due to declining egg quality. Of course, not everyone affected by infertility uses IVF to try to conceive. And of those who do, only a fraction use PGT. One study found that of the total number of IVF cycles in the United States between 2014 and 2016, about 20% used PGT. Because PGT for gender selection often raises more ethical concerns than when it’s used for genetic screening, it’s less popular among prospective parents—but Silverberg predicts that won’t always be the case. “As we get better [at the technology], the balance will shift vastly to people wanting to do it electively." In other words, many reproductive medicine physicians believe the demand for elective PGT is low simply because the science hasn’t caught up to the demand. It’s not that people don’t want to choose the eye color of their babies—it’s that it isn’t possible (yet).
How Much Does PGT Cost?
A single IVF procedure can cost anywhere from $10,000 to $15,000, depending on where in the country you live and if there are any mitigating risk factors for the procedure (like a woman with a pre-existing medical condition). However, PGT is not an automatic component of IVF procedures; it’s an extra step that carries an additional cost to couples who select it (usually anywhere from $4,000 to $6,000). In total, you could end up spending anywhere from $14,000 to $21,000 on an IVF procedure that includes PGT. What’s more, not every IVF cycle is successful, and many couples find themselves facing costs associated with multiple procedures. When IVF first became an option for couples with infertility, the expenses were entirely out-of-pocket. Insurance companies provided no coverage and a patient who couldn’t afford to pay for 100% of the costs was essentially excluded from undergoing the procedure. As the practice of reproductive medicine has continued to grow—and as more and more patients find themselves in need of assisted reproductive technologies like IVF—those tides have begun to change. Even if your insurance company doesn’t pay for any of the costs associated with IVF, there are some ways to save money, such as refund programs and using a flexible spending account for some expenses.
Some plans cover testing but not procedures Some plans cover the fertilization procedure but not other parts of the process, like injections Some plans will cover a specific number of treatments but not more Some plans cover everything, and some cover nothing at all
Per RESOLVE: The National Fertility Association, only 17 states currently require insurers to either cover or offer coverage of the diagnosis and treatment of infertility. For a state-by-state breakdown of IVF insurance coverage, the National Conference of State Legislatures offers a searchable table.
The Ethics of Designer Babies
You’ve probably heard the expression “just because we can do something doesn’t mean we should,” and that’s an apt point to consider when it comes to the ethics of reproductive technology. If the time comes when we can sift through embryos to select babies with specific physical characteristics (or even personality traits), it will necessarily raise the question of whether or not we should approve of, endorse, or participate in that level of interference with human biology. Just like nearly every other ethical issue, people fall on either side of the debate. Silverberg says that using the technology to identify chromosomally normal embryos means that IVF patients have a lower chance of miscarriage and a higher chance of ultimately giving birth to a healthy baby. Identifying normal embryos also reduces the need for transferring multiple embryos in one procedure, a practice that can result in triplets and twins (which many reproductive medicine doctors are trying to move away from due to the associated health risks). While embryo selection may prevent multiple births and the associated risks, Silverberg also says that genetic selection is still, in effect, overriding nature. “[In natural conception], normal sperm tend to work and abnormal sperm don’t usually result in pregnancy … but in IVF, one of my embryologists is playing the role of ‘nature’ to identify normal-looking sperm,” a job which comes with a margin of error. The health complications associated with multiple births are:
Gestational diabetes and hypertension Birth defects and twin-to-twin transfusion syndrome Low birth weight and underdevelopment of vital organs Postpartum hemorrhage Cesarean delivery
When IVF first became popular, many doctors were transferring multiple embryos into the uterus in the hopes of guaranteeing at least one would turn into a pregnancy. But this led to a boom in the number of multiple births. Today, the standard practice among most physicians is to transfer only one embryo per cycle in women under age 35, whether or not PGT is used. In addition to Silverberg’s perspective on the ethics, experts also pose the following concerns about embryo selection and the growing trend of designer babies:
Elective vs. Non-Elective Selection
As with any complex and controversial issue, prospective parents considering whether or not to screen their embryos for genetic disorders should carefully weigh the ethics involved and the pros and cons. But Silverberg says those pros and cons differ based on the reason for the screening, i.e. whether it’s elective (testing for a baby’s sex; this is not widely done outside the context of sex-linked health conditions) or non-elective (testing for serious or life-threatening conditions).
Pros of Elective Screening
Cons of Elective Screening
Pros of Non-Elective Screening
Cons of Non-Elective Screening
The Bottom Line
Deciding whether or not to undergo genetic screening of embryos before an IVF transfer is, obviously, a personal choice—but just because a choice is personal doesn’t mean it can’t have far-reaching consequences. Electing to screen embryos for or against certain characteristics puts a patient at the forefront of participating in a high-tech and controversial scientific procedure, one that could affect not just individual families but society at large. There are pros and cons, advantages and disadvantages, and complex ethical concerns to consider. In other words, it’s not a choice that should be made lightly: prospective parents should do research, talk to the doctors involved, and resist feeling rushed or pressured throughout the decision-making process.
