Many of the ethical problems with in vitro fertilization (IVF) have been addressed on this blog in the past. Today we will revisit the topic again. This time we will point out its moral shortcomings while discussing one of its outcomes: designer babies.
What follows is an article published on MIT’s Technology Review.com on Monday, October 22, 2018. It was written by Laura Hercher with the title, “Designer babies aren’t futuristic. They’re already here.” It has the subtitle, “Are we designing inequality into our genes?” The original article found here will be in black font. My commentary will be in blue.
At first, Matthew assumed the weakness in his knee was the sort of orthopedic nuisance that happens when you turn 30. It was weeks before he consulted a doctor, and months before it occurred to him that there could be a connection between his worsening limp and a cousin’s shoulder problem when they were kids. DNA testing confirmed it: Matthew, like his cousin, had a genetic form of dystonia, a condition where muscles contract uncontrollably. Their grandfather most likely had dystonia as well.
[Classic opening to an article of this sort: tell of someone’s personal experience. Elicit empathy.]
I’d met Matthew only a few months earlier, when he’d married my friend’s daughter, Olivia, in one of those hip old New York hotels with an elegant downtown vibe. Since I was the only genetic counselor of their acquaintance, they brought their questions to me. With their permission, I am sharing their story. I have changed their names to preserve their privacy.
[A ‘genetic counselor?’ That sounds likely to be a highly morally-problematic career choice.]
Matthew was lucky. His was a mild version of DYT1 dystonia, and injections of Botox in his knee helped. But the genetic mutation can cause severe symptoms: contractures in joints or deformities in the spine. Many patients are put on psychoactive medications, and some require surgery for deep brain stimulation.
[Sigh! You’re supposed to feel even more empathetic.]
Their kids, Matthew and Olivia were told, might not be as lucky. They would have a 50–50 chance of inheriting the gene variant that causes dystonia and, if they did, a 30% chance of developing the disease. The risk of a severely affected child was fairly small, but not insignificant.
[Each child of “Matthew” and “Olivia” would supposedly have a 15% chance of showing symptoms for this disease. Okay, fine.]
My friends learned there was an alternative. They could undergo in vitro fertilization and have their embryos genetically tested while still in a laboratory dish. Using a technology called pre-implantation genetic testing, they could pick the embryos that had not inherited the DYT1 mutation.
[Immediately you ought to be waiving a red flag here. To fertilize eggs with sperm outside the confines of the conjugal act is a grave sin. To do so outside of the physical intimacy of sex remains completely unnatural. To do so clearly violates the natural law. Children are not meant to be conceived in sterile labs by technicians in white lab coats. Moreover, children are not commodities to be bought and sold; they are gifts from God.
As well, what do you think happens to the embryos who fail the genetic testing? They are killed. Those are human beings—albeit very tiny ones, but humans beings all the same. And yet they are killed off in the name of science for eugenics practices. How morally appalling.]
It would be expensive—costs for IVF in the US average over $20,000 for each try, and testing can add $10,000 or more. And it would require an unpleasant two-week process of ovarian stimulation and egg harvesting. “It wasn’t the way I saw myself making a baby,” Olivia told me. But they wanted what the procedure could offer them: a guarantee that dystonia was eliminated for the next generation, and beyond.
[“Olivia” didn’t imagine “making” a baby this way? Yeah, because this is unnatural. It is unbecoming of rational human beings.]
Matthew and Olivia don’t think of themselves as having a “designer baby.” That term has negative associations, suggesting something trivial, discretionary, or unethical. They weren’t choosing eye color or trying to boost their kid’s SAT score. They were looking out for the health and well-being [sic] of their future child, as parents should.
[Yes, of course, parents ought to protect their children to ensure they are healthy and well. But ought they permit the murder of several other of their progeny in order to have one survive till birth? Is just one of their children worth keeping safe and all their others are expendable?]
We risk creating a society where some groups, because of culture or geography or poverty, bear a greater burden of genetic disease.
[Oh, the irony. In the past controlling births was seen as a means to limit or eliminate “undesireable” genetic lines from reproducing. Now we have gone all the way towards convincing folks to undergo these tests at great cost to themselves because they owe it to future generations to rid out their own DNA.]
Public opinion on the use of assisted reproductive technology consistently draws a distinction between preventing disease and picking traits. The Johns Hopkins Genetics and Public Policy Center, which contacted over 6,000 people through surveys and focus groups from 2002 to 2004, summed up its findings this way: “In general, Americans approve of using reproductive genetic tests to prevent fatal childhood disease, but do not approve of using the same tests to identify or select for traits like intelligence or strength.” The dystonia gene is in a gray zone—some people born with it live perfectly healthy lives—yet presumably few parents would criticize Matthew and Olivia’s choice to weed it out.
[Morality is not determinable by majority vote, for one thing. For another, isn’t that a pretty telling admission? Some people born with dystonia go on to lead perfectly “perfectly healthy lives.” So, we are not talking about a disease that cripples everyone it comes into contact with. Not that that would make IVF acceptable anyway.]
All embryo testing does fit the “designer” label in one important way, however: it is not available to everybody.
[The author of this article, as hinted at by her subtitle to the article, is hung up on this diabolical point. She actually laments that not everyone does have or will have the ability to screen their children’s DNA for genetic defects. In other words, Hercher laments that not everyone will be able to play god.]
Matthew and Olivia opted in to what is a quiet but significant trend. Although the number of couples using this technology remains small, it is growing rapidly. According to the Society for Assisted Reproductive Technology, the number of US IVF attempts with single-gene testing rose from 1,941 in 2014 to 3,271 in 2016, an increase of almost 70%.
[This remains a danger with in vitro fertilization: it is the vehicle by which the practice of eugenics is made possible. As she states here, more and more folks are opting to use the technology in this way.]
This is only the beginning. As the price of genetic testing of all kinds drops, more adults are learning about their genetic makeup as part of routine medical care and discovering specific genetic risks before pregnancy. But these people are still most likely to be affluent and educated, like Olivia and Matthew. While they consulted with IVF clinics, Olivia’s own brother and his wife got news of a gene that increased risk for cancer in their kids. “If you could get rid of it, why wouldn’t you?” he asked.
[“Matthew” asks the altruistic question. Hey, no one in their right mind would oppose the removal of disease from our society. That is granted. The problem here is the means by which “Matthew” and “Olivia” are using with in vitro fertilization to commodify their children. Human beings are not, by their very nature, meant to be the product of laboratory work. The act by which they come into existence ought to be one filled with literal life-giving love between a husband and wife. In any other context we would recognize a disorder if a third party became involved in the conception of a child. So why would a lab technician be any different?]
Cost was not a concern for these couples, but it is an obstacle for many Americans. The Centers for Disease Control and Prevention (CDC) estimates that 1.7% of babies born in the US today are conceived using IVF. It’s much higher in countries that publicly fund assisted reproductive technology: 4% in Belgium, 5.9% in Denmark. A 2009 study found that 76% of the medical need for assisted reproduction in the US is unmet.
[Startling statistics! Almost two percent of all babies born in the US were conceived by IVF? Heaven, help us. This can be explained by the separation of sex and babies, as brought on by the cultural acceptance of contraception. There is no denying that.]
Insurance doesn’t normally cover IVF in the US, except for a handful of states where coverage is mandated. Even policies that cover fertility treatment are inconsistent in what they reimburse. Coverage for pre-implantation genetic testing is downright Kafkaesque. Under many policies, testing the embryos is covered, but the IVF procedure itself is not, because the couples are not infertile.
[The author of the article here laments the difficulty people have to access this technology. How evil this lie of thinking is! While it is commendable that folks want to bear children. If they choose to conceive with in vitro fertilization, then they are using an evil means to achieve a good end. And that is morally unacceptable. “The end does not justify the means” (Catechism of the Catholic Church, 1753).]
“The analogy I like to use,” says James Grifo, director of the Division of Reproductive Endocrinology and Infertility at NYU Langone Health, “is if you were having coronary bypass surgery and they didn’t pay for cracking the chest.”
At least part of the reason the IVF industry is growing is not that more people can afford it but that those who can are paying for new kinds of services. Egg banking, for example, is now aggressively marketed to younger women as an insurance policy against age-related infertility. In 2011, egg banking did not even exist as a category in the CDC’s annual report on IVF; by 2016, storing eggs or embryos was the purpose of 25% of all IVF cycles. Elite companies like Facebook offer egg freezing as a perk, but for most people it remains a luxury.
[Heaven must be weeping. How come so many people not see the moral depravity of “egg banking?” Rearing children is not a science experiment. The possibility of having children ought to be reserved to men and women who are married. Are you married? Great, you can conceive children… now. You don’t need to have painful, oftentimes health-reducing procedures done in order to conceive in the future. Are you not married? Then until you get married, you have no reason to take such drastic steps.]
Cost isn’t the only barrier. Reproductive technology is less acceptable in racial, ethnic, and religious groups where being seen as infertile carries a stigma. Language barriers can reduce awareness and referrals. Geography also plays a role, since IVF clinics cluster in areas of greatest demand.
[More lamentation from the author about the supposed inequality of access to this diabolical technology.]
Presumably, many people would make the same decision as Matthew and Olivia if given the option, but many don’t have that choice. Our discomfort around designer babies has always had to do with the fact that it makes the playing field less level—taking existing inequities and turning them into something inborn. If the use of pre-implantation testing grows and we don’t address these disparities, we risk creating a society where some groups, because of culture or geography or poverty, bear a greater burden of genetic disease.
[I disagree with this author. Our “discomfort around designer babies” has NOT always been about supposed genetic inequalities among different ethnic groups. That is preposterous. Rather, our discomfort around designer babies, which are made possible with in vitro fertilization, remains the hubris of man to think he can be like God. It is to pretend to have the right to decide who gets to live and who must die. That is what makes this so wicked.]
What could change society more profoundly than to take genetic disease—something that has always epitomized our shared humanity—and turn it into something that only happens to some people?
[What a bizarre ending to a morally corrupt article. Lord, have mercy.]
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