What Are Designer Babies?

designer babies

iStock / BlackJack3D 

In a world where we can customize almost everything to suit our individual needs and preferences—from clothing and electronics to vitamins and pet food—it seems almost odd to leave anything as monumental as having a baby to chance. 

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. 

Forty years ago, the only information expectant parents had about their unborn baby came from grainy, hard-to-read ultrasound photos; now, parents can not only learn about the genetic makeup of their embryos, but they can also decide whether or not to utilize those embryos based on that same genetic information in a process called preimplantation genetic testing (PGT).

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,

In vitro fertilization (IVF) is a process by which a woman is induced to ovulate and several viable eggs are harvested from her uterus, at which point they are introduced to—or sometimes purposely injected with—sperm from a male partner or donor. After that, one or more healthy eggs are transferred back into the uterus in the hopes that pregnancy will occur. 

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.

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).

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.

Quick Facts About Infertility in the U.S.

According to the U.S. Department of Health and Human Services (HHS), infertility is a common condition affecting about 10% of couples. There are many different causes, including polycystic ovary syndrome, fallopian tube abnormalities, poor sperm quality, and endometriosis. About one-third of cases are caused by female infertility, one-third by male, and one-third by mixed or unknown causes.

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.

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.) 

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.

Insurance coverage for IVF is quite varied in the United States:

  • 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.

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.

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).

According to the University of Rochester Medical Center, the more babies there are in a pregnancy, the more likely it is that the babies will be born prematurely and have health complications. The mother is also more prone to health complications. About half of all twins and nearly all babies of higher orders of multiples (like triplets or quadruplets) are born before 37 weeks. 

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.

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. 

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:

  1. If life begins at conception, as some people believe, destroying embryos on the basis of predicted defects or undesired traits could be considered immoral.
  2. There are no guarantees with embryo selection, so embryos may be chosen or rejected based on incorrect testing—in other words, there is not always a “return on investment” for the couples who spend thousands of dollars on the screening.
  3. There are socio-economic concerns; if only wealthy or affluent people are able to access and utilize the technology, it could create problematic divisions across income levels.
  4. The field of PGT is still new and lacking long-term studies on its safety and efficacy.
  5. Disability advocates have voiced concerns over the messaging that genetic screening sends about the value of their lives. If the practice were to become widespread, there could be judgment placed on parents who choose to have babies likely to be born with genetic conditions, as well as prejudice directed at the disabled persons themselves. It may also, over time, drive down the medical research and social support generated for genetic conditions.
  6. Though choosing not to transfer an embryo based on sex isn’t the same as terminating a pregnancy based on sex, considering the complicated history that sex-selective abortion has around the world, it stands to reason that if PGT resulted in significantly more or fewer males or females being born, it would open up an entirely new controversy.

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

  1. If you consider PGT to be a “consumer product,” as some bioethicists do, then it makes sense that parents have a right to pick and choose as they please—especially when they’re already spending a large sum of money on an IVF procedure to maximize their chances of a healthy pregnancy.
  2. Since some genetic conditions are sex-linked, like hemophilia and Fragile X syndrome, choosing an embryo based on sex may help parents avoid those conditions. If you know that a condition runs along the male genes in your family, you may decide against transferring male embryos. 

Cons of Elective Screening

  1. More and more fertility specialists are working towards a united goal of driving down the cost of having a single, healthy baby through IVF. Elective technology doesn’t necessarily do that, Silverberg said, and limits the amount of dollars that can be used toward producing healthy babies in non-elective screening. 
  2. The idea that parents could genetically select a child with certain biological or, eventually, physical characteristics forces some people to wonder if we’re on a slippery slope that commodifies human life—not to mention sets parents up for disappointment if and when the screening fails to be 100% accurate.

Pros of Non-Elective Screening

  1. It’s no coincidence that many utopian movies and novels include societies full of healthy people—most of us dream of a world where no one has painful or life-threatening diseases like cancer, muscular dystrophy, or sickle cell disease. With genetic screening, Silverberg says we may one day be able to identify embryos capable of producing healthy, strong adults and eliminate some of the genetic lines of diseases that run in families. 
  2. The older a woman gets, the higher her risk of pregnancy abnormalities and miscarriage. “If you want to max your expenditure of fertility dollars," said Silverberg, "genetic testing is cost-effective because it raises the chance of pregnancy while reducing the risks of complications, miscarriages, and high-risk multiple pregnancies.”

Cons of Non-Elective Screening

  1. Interfering with the “natural order” of reproduction requires a tremendous amount of manipulation of embryos, says Silverberg. “There’s a lot of stuff that has to be done and it’s a miracle that it even works.”
  2. The results of a recent 600-participant study, called the Star Trial, unexpectedly failed to show any outcome benefit from next-generation testing for genetic disease. Specifically, there was no increase in the live birth rates, and Silverberg said the trial also showed there is huge variability in clinic protocols and overall results.

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.

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Article Sources
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