When my husband and I interviewed yet another fertility doctor about his proposed treatment for my recurring miscarriages, we asked him about pre-implantation genetic diagnosis to test whether the embryos we produced through in vitro fertilization were chromosomally normal and therefore less likely to miscarry.
“PGD? You don’t need it,” the doctor said. “Just keep getting pregnant, and if you miscarry, you miscarry. Eventually one will stick.”
I wanted to grab a pair of forceps and forcibly extract his prostate. I had carried a fetus for 5, 7, and 9 weeks and miscarried each time, leaving me a fat, hormonal mess, taking another four months to be ready to get pregnant again. At 42, I didn’t have time to keep getting pregnant; most fertility doctors said I had less than a 10 percent chance of bearing a child through IVF. And I certainly didn’t have time for another devastating miscarriage.
That’s why we wanted to do PGD. The eggs of women older than 40 have abnormal chromosomes 50 to 70 percent of the time, and while many of these eggs do not fertilize or implant in the womb, others result in miscarriages or babies with severe birth defects. Biopsying my embryos to find chromosomally normal ones might not increase my chances of having a baby—after all, there may be no healthy embryos to transfer—but it would reduce my chances of having a miscarriage.
While it’s too early to say whether embryo testing can help older patients with recurrent miscarriage, testing embryos should not be controversial. Genetic tests can identify embryos carrying genes for specific diseases such as Tay Sachs or Gauchers. For parents who are carriers of these diseases—some of whom have already borne afflicted children—PGD can help them have a child who is not going to die.
But that simple message is obscured when the media highlight those who are opposed to such life-saving treatments.
Take “Ethics Questions Arise as Genetic Testing of Embryos Increases,” Gina Kolata’s New York Times article last month, which presented the heartbreaking story of Amanda Kalinsky, who at 26 learned she had the gene for Gerstmann-Sträussler-Scheinker syndrome, a rare neurodegenerative disease “which would inevitably lead to her slow and terrible death,” most likely in her mid-30s to 50s. Her grandfather, great-aunt, uncle, father, and cousins all died from it. Kalinsky decided to put an end to her family legacy and select IVF embryos without the GSS gene. She and her husband now have three healthy children—and two frozen embryos they plan to use—but, Kolata writes, “the procedure also raises unsettling ethical questions that trouble advocates for the disabled and have left some doctors struggling with what they should tell their patients.” The article goes on to question the ethics of discarding unhealthy embryos like Kalinsky’s GSS ones. “Is it acceptable,” Kolata wrote, “for diseases like GSS, that develop in adulthood?”
Or perhaps, as the Wall Street Journal suggested last month, PGD is contentious because it screens out mutations that have “only” a 45 to 65 percent chance of turning into cancer.
“Family With a Risk of Cancer Tries to Change Its Destiny” (subtitled “A Controversial Procedure Lets Couples Select Embryos Free of a Genetic Mutation”) reports that Katie Dowdy had the nerve to have her embryos tested for the BRCA1 gene she carries … even though “the 34-year-old doesn’t have cancer.” No matter that she saw many family members die from breast cancer and has lived with the worry about getting cancer for as long as she’s known she has the gene. “Opponents of PGD for breast cancer also say that having a BRCA-gene mutation doesn't mean a person will necessarily get the disease and that there are options for detecting and treating the cancer,” the story says. (In other words, let your children inherit the disease, and let them treat it, too.)
It seems that as embryo-screening technology improves, the chorus against it gets louder.
I could understand if the concerns were about technique. In the past, a different system, fluorescent in situ hybridization, was used to evaluate the genetic makeup of an embryo by biopsying a single cell of a 3-day embryo, but the technique could not analyze all the chromosomes, occasionally providing false results. The movement today is toward biopsying 5-day embryos using microarray comparative genomic hybridization, which examines all 23 chromosome pairs and provides a more detailed picture of the entire length of the chromosomes. (In both cases, if done properly the embryo develops normally despite the missing cell.)
But that’s not the primary objection. First, critics worry about the use of PGD to choose the sex of the baby. (Although contrary to popular belief, more families in the United States are choosing girls than boys.)
But masses of people are not going to opt for “gender balance” (the fertility clinics’ euphemistic term). If you want to do gender selection, you first have to undergo the painful and costly process of IVF, taking hormones, shelling out tens of thousands of dollars, and then, for genetic screening, you have to add thousands more dollars and more time to store as many embryos as possible. I’m doing genetic screening now to reduce my chance of miscarriage, and trust me, not too many people will voluntarily put themselves through this simply to select a little boy or girl. (The Times cited a 2 percent use of PGD out of 27,000 procedures for gender selection—in other words, 98 percent of the time it is used for other, more serious reasons.)
The second concern, as expressed in the Journal article, is that “Critics fear genetically vetting embryos can be used to create so-called designer babies.” Ah yes, designer babies, the Frankenstein fear the media has been mongering for years.
“If embryos can be selected to be free of harmful genes, they [the unnamed critics] argue, who is to say they will never be screened for particular genetic traits that parents might desire or want to avoid?” notes a 2009 article in the Telegraph. “Enter the ‘designer baby’ who is destined to be top of the class, excel in sport, and have hair, eyes and other physical characteristics that fit his or her parents’ wish list.”
But designer babies are “a whole lot of media hype without a lot of science,” writes former embryologist Carole Wegner on her blog Fertility Lab Insider. “Frankly, we don’t know which genes to pick, if we could pick them and how and when to turn them on etc etc. And even if we could ... there’s this little thing called environment and self-determination that would foil that game plan.”
Or, as Jessica Grose recently wrote in Slate about a different fertility procedure, “Designer Babies Aren’t Coming, the New York Times Is Just Trying to Scare You.”
“Designer babies,” “slippery slope” … the next phrase in this overstated line of thinking is, of course, eugenics.
“We’ve just taken another step down the slippery slope toward eugenics,” William Saletan wrote in 2006 in Slate. While Saletan initially admits that PGD “will spare many families a lot of suffering,” he worries about the laxer British guidelines. “You can now chuck embryos in Britain for diseases that are more treatable, less likely to strike early in life, and less likely ever to occur in the person whom the embryo would become.”
Chuck the person whom the embryo would become.
That is the real concern of most people who argue against genetic screening: that the embryo is a person.
“Both the abortion question and our feelings about IVF are rooted in how we conceptualize embryos,” says Wegner. “If we see embryos as actual human beings or persons—at fertilization, vs. cells with the potential to become actual human beings or persons—that colors everything.”*
Plenty of Republican politicians have proposed bills that would have embryos be defined as people, usually for the purpose of banning abortions. Fertility experts fear these “fetal personhood amendments” will have dire implications for IVF. “As professionals who are intimately involved in infertility diagnosis and care, we are concerned about recent efforts by several lawmakers, both at state and federal levels, to introduce legislation that would define human life as commencing at fertilization,” was the statement from the College of Reproductive Biology, a group of more than 800 reproductive scientists, physicians, and laboratory professionals dedicated to the study of reproductive medicine and biology, and the diagnosis and treatment of reproductive disorders. “The cells of the embryo at this stage [7-day embryos of 150-300 cells] are undifferentiated, and the development of life sustaining organ systems requires more than 20 weeks gestation.”
What drives the most fear about PGD not creating designer babies but discarding embryos. The arguments imply that when you select a healthy embryo—one that does not carry a known mutation or genetic abnormality—you are aborting less healthy embryos.
Consider this quote from one of the ethicists in the Times: “Eliminating embryos with such [GSS] genes is essentially saying someone like Ms. Kalinsky should never have been born,” said David Wasserman, an ethicist at Yeshiva University and consultant to the department of bioethics at the National Institutes of Health. Wasserman (who works at a university known for its religiously conservative positions) is basically equating genetic screening with abortion.
As someone who is creating embryos for the express purpose of selecting the healthiest eight-cell structures to transfer to my womb and discarding the rest because they would not result in a healthy baby, I believe that embryos are not life. They are only the potential for life.
Genetic screening is a wonderful technology that can change the face of IVF: Doctors can finally know which embryos are healthy instead of guessing based on an embryo’s appearance (healthy-looking embryos are not always healthy). Genetic screening enables doctors to transfer fewer embryos to a woman’s womb, reducing instances of multiple births, which are also unhealthy for the mother and children. Transferring healthy embryos will also prevent mothers from having to abort mid-term or bear babies with birth defects. PGD enables thousands of couples to bear healthy babies.
In the future embryo screening might be part of all IVF. And while it’s valid to raise concerns about the ethical implications of which qualities the screening will test for (serious genetic mutations versus superficial ones like gender or skin color), what’s not valid is to make people fear PGD itself.
Correction, March 19, 2014: This article originally stated that the NIH does not fund fertility treatment or stem-cell research. Most restrictions on funding such research have been lifted. The information outlining the funding restrictions has been deleted. (Return.)