Chapter 7: Designer Babies
I’m a quadriplegic. I know my limits. You’ll never strap me to an able-bodied parachute-jumper to go skydiving. You’ll never catch me following my quad-friend Becki into the ocean deep to scuba dive the Caribbean Sea. I will never go bungee jumping in my wheelchair, nor be lowered into a cave. I don’t care how many disabled people are joining handicap equestrian clubs, I will not be talked into getting up on a horse. None of that Evel Knievel stuff in my power wheelchair, thank you.
Not one to go to extremes, I’m the type who enjoys watching other people free-fall, bungee jump, scuba dive, and horseback ride. The other evening I was reading a book about Sir Edmund Hillary’s ascent to the top of Mt. Everest. In 1953, the world considered his climb a global extreme. One world-class climber wrote, “Humans must constantly push their limits — if something’s broken, we fix it; if there’s a problem, we must solve it; if there’s an ocean, we cross it; if there’s a mountain, we must climb it.” It’s the principle behind all the extreme television programs so popular these days. There’s the Extreme Home Improvement show, Extreme Surfing, and Extreme Skateboarding.
The most popular of all is Extreme Makeover, where dowdy women and double-chinned men subject themselves to a complete body makeover. We’re not talking a little bit of Revlon blush, an eye lift, and a hairpiece; we’re talking hundreds of thousands of dollars spent in reconstructing jaws, liposuctioning hips, redesigning chins, and enhancing breasts and buttocks. One woman, interviewed afterward, enthused, “It’s amazing! If you don’t like your body, you can redesign it!” When she stepped from behind the curtain to show her friends and family her extreme makeover, everyone gasped in delight. The few who seemed a little disapproving were soon silenced. Who could argue with someone’s preference to improve his or her life?
We seem to be grabbing at technology as though it were a magic wand, designing our breasts and backsides, brains, broken genes, and babies, all in one breath.
These are the days of global extremes. Plus, we are a global community. We live in a smaller world where people with river blindness in West Africa might well be called our neighbors. It begs the question: What responsibility does the woman who spends $450,000 on a new face and figure have toward a child in Albania who will die for want of a simple surgery on her esophagus? And not only the woman — what responsibilities lie with doctors and technicians? What about investors and research institutes, pharmaceutical companies and plastic surgery centers?
Who are our neighbors? How should we triage not only our wealth, but our technology?
Almighty God scrutinizes what we do with our wealth and subsequent technological advancements, for he tells us in Hebrews 4:13, “Nothing in all creation is hidden from God’s sight. Everything is uncovered and laid bare before the eyes of him to whom we must give account.” What we think about biotechnology — what we decide, and how we persuade or advise others — counts before God.
Matthew 12:36 – 37 warns, “But I tell you that men will have to give account on the day of judgment for every careless word they have spoken. For by your words you will be acquitted, and by your words you will be condemned.”
If there’s an ocean, cross it; if there’s a mountain, climb it. But designing babies? Enhancing genetic performance? Selecting the fetus with potentially the best brains?
I don’t think so.
Let’s leave the extremes to the surfboarders. May God grant us the power to change the things we can, grace to accept the things we can’t, and the wisdom to know the difference.
JONI
We have already seen the legacy of eugenics in America and in Germany, and observed the beginnings of a new eugenics as “quality control” screens out the handicapped — whether in the lab as test-tube babies are conceived, or through the abortion of the less-than-perfect. We also saw how the cloning of babies is becoming technically possible, and that some influential voices support the practice.
But destroying the inferior, and copying those whom we like, amount only to steps on the way to the real goal of eugenics: superior people who reflect our preferences. That is, real “designer babies.” New technologies are coming together to make this possible. And to see how this approach is already getting under our skin, we come back to a technology we have already grown used to. Whether or not in vitro fertilization is ever right, it is increasingly being used in ways that take us straight back to eugenics — and take us forward to a much more sophisticated eugenics in the years to come.
CHOOSING OUR BABIES
The choices that test-tube baby technology makes possible are already facing people with terrible dilemmas . . . and temptations. Sharla Miller and her husband had three sons: Anthony, Alec, and Ashton.
“They fish, hunt, and do all that stuff with their dad,” she says. “I go along, not necessarily enjoying it, but to be part of the family.” So when she wanted to have another child, she determined it had to be a girl. With her husband Shane, she visited a California fertility clinic.
“Several medical procedures and $25,000 later, Miller got what she had wished for, times two. She is due to deliver twin girls.” They created four more healthy female embryos, and seven more boys. They have frozen them while they work out what to do with them.
Sometimes things go terribly wrong. “Laura Howard was hoping her trip to a fertility specialist would make her dream of a child with the man she loves come true. But as she left the office, the doctor suddenly ran out to the lobby and called her back. There was a grave mistake. Instead of being inseminated with the sperm of her fiancé, she received a vial of semen from another man.” Two weeks later she was confirmed pregnant. “ ‘I don’t sleep. I am always stressed,’ Howard said. ‘My fiancé is very distraught. He had no intentions of raising someone else’s child.’ ”
China’s Missing Girls
China is missing girls — forty to sixty million of them — which will leave an equal number of young Chinese men without wives. Chinese couples, allowed to have only one or two children, abort girls in the womb in order to try for boys. Boys are preferred for traditional cultural reasons, because they support their parents in their old age (girls become part of their husbands’ families when they marry), because they extend the family line, and because in rural areas, they can perform more labor.
Between 117 and 119 boys are now born in China for every 100 girls, when 105 boys should be born for every 100 girls (Mother Nature prefers boys by 5 percent). The Chinese government has announced plans to eliminate the new disparity between male and female births by 2010, just five years away.
The London Financial Times reports on the polarized public debate that new technology is producing. Going beyond the screening out of diseases, “the discovery of genes linked with traits such as aggression and sexual orientation have raised fears of a reawakening of eugenic policies aimed at improving the gene pool.” Helena Kennedy, chair of the UK’s Human Genetics Commission, “has warned against the creation of a genetic underclass that is unable to obtain medical insurance and the possibility of discrimination against people who refuse to terminate handicapped babies.”
Britain’s Human Fertilisation and Embryology Authority felt compelled to deny a report that parents would be able to choose such features as hair or eye color. In an admission that “ethics” is also under review, the spokeswoman said: “It’s such a fast-moving area and they will look at how much the science has advanced as well as looking at whether the ethical and legal sides have moved on.” The idea that the “ethical side” is “moving on,” like the science, says more than she intended about the British approach, the most “liberal” in the free world.
US News and World Report carried a report under the title “Our Biotech Bodies, Ourselves,” asking the question: “What if, by taking a drug, you could possess an IQ of 250? Or by tinkering with your genes, you could have the athletic prowess of a decathlete? Or by injecting yourself with stem cells, live to be 160? Would you do it? Would these enhancements make you less human?”
The report continues: “In a speech last year before a gathering of enhancement advocates, William Sims Bainbridge, a deputy director at the National Science Foundation who studies the societal impact of technology, warned that ‘scientists may be forced into rebellion in order to carry out research prohibited unnecessarily by powerful institutions.’ ”
As the US News and World Report shows us, while the “designer baby” question begins with the screening of in vitro embryos and unborn babies for serious genetic disease, it goes on . . . and on . . . and on. First we have trivial uses of the screening technology (like the woman who aborted two babies because they had an extra finger). Next, we have “positive” uses of it, like wanting a boy of red hair or a sunny disposition. Then, as new technologies come on stream, we start making serious changes in human nature.
IN VITRO FERTILIZATION:
THE REPRODUCTIVE GENIE OUT
OF THE TEST TUBE
The birth of Louise Brown in England in 1978, the world’s first test-tube baby, triggered a worldwide debate about two key issues — in vitro itself, and back of that, whether human embryos should be used for experiments. Only through years of experiments on human embryos had Louise Brown become possible.
Most of the ethics debate naturally focused on the use of embryos for experiments that would end in their death (we discuss this in the next chapter). There was little discussion of the techniques themselves, as a means of enabling women to have babies after fertilization in the lab — especially not among evangelicals. The Roman Catholic church gave guidance to its members, and criticized any use of the technology. Since the Catholic church does not approve of most forms of contraception, such a stance did not prove a great surprise and suggested to many evangelicals that this was not an issue for them. The widespread evangelical approval of contraceptives that do not kill embryos (some techniques do) could include an approval for in vitro. But for a technology with such enormous implications — including for Christian couples struggling with infertility and other problems, such as inherited disease — the near silence of the evangelical church was a disaster. Tens of thousands of Christians have made use of these technologies, often without any idea of the serious ethical issues at stake.
Surrogacy at the Church Door
Believers have been left to their own devices. I remember speaking in a church on Sanctity of Life Sunday about test-tube babies, and being met at the door by a couple who felt anxious to introduce me to her sister, acting as a surrogate mother, heavily pregnant with their child. I remember leaving our own church worship service one Sunday and being asked urgently by someone I barely knew to call his daughter and her husband that afternoon, as the next morning she would be taken into the hospital to begin the process of in vitro. He said she felt badly about it, but was being pushed into it by her husband. I did call them; we had a long discussion and they decided to cancel the treatment. Another Sunday I was to be guest speaker and someone “warned” me that the pastor’s children had all been in vitro babies. The list goes on and on.
NIGEL CAMERON
And the problem lying behind all of these examples is not that in vitro is necessarily wrong, but that few have been thinking about whether and when and why it might be right. A vast revolution has taken place in the way in which many families (and also singles) are enabled to have children, and the evangelical church has consistently avoided facing the question and inquiring and advising appropriately. As a sign of how well we shall be able to cope with the next stages in this continuing revolution in biotech and human dignity, it is not encouraging.
WHAT IN VITRO MEANS FOR EUGENICS
One huge problem is that embryos are observed and evaluated, and only “good” ones get implanted — the ones seen to have the best chance of success. Any with diagnosable genetic or other problems are destroyed. So in vitro provides the context for a dramatic “quality control” exercise at the start of human life.
The other basic problem is that of the “spare” embryos. If a group of embryos is fertilized, what of the others — “good” or otherwise — that do not get implanted? The custom has been to freeze them and maintain them in case the couple chooses to have another in vitro pregnancy — either because this one fails, or they decide to have more children. Thus they avoid the costly and unpleasant process of having additional eggs extracted; a supply of defrosted embryos is available for implantation at any future time.
From one point of view, this all seems like a sensible and wonderful way of enabling otherwise infertile couples to have a family. From another, it begins to take on the flavor of the brave new world. Embryos are already being selected, and then implanted or discarded (i.e., killed), on the basis of their genetic qualities. The motive here has, of course, been to get rid of some genetic diseases by getting rid of the embryonic human beings afflicted by those diseases. Already we have examples of “pre-implantation genetic diagnosis” (PGD) being used to provide transplant donors for older children.
The principles and the mechanisms are in place to enable any human birth to be screened and any human being to be selected for quality. Quality control of human beings has arrived.
We have already mentioned the movie Gattaca. In the story, a family has two sons. They decide, against the trend, to have their first child without using the in vitro techniques that have become standard in their world. They opt for what is known as a “faith birth” or a “God-child.” So immediately after Vincent’s birth he is tested and his parents given the predictions for his life on the basis of what is known about his genes. He has a high chance of early death from heart disease, as well as other ailments. Much of the movie focuses on the discrimination against Vincent, both in the home (despite his parents’ evident love for him), in school (a kindergarten refuses to admit him as school insurance will not permit it), and work (despite laws that forbid “genoism” — genetic discrimination).
When they decide to have a second child, they abandon “faith births” and join the crowd. Once bitten, twice shy. Their embryos are screened and they are given sophisticated choices. What do they want to screen out, and — despite their initial reluctance — what do they want to add? What can they afford? “He will still be you,” says the helpful MD, “just the very best of you.”
While some of the options still lie beyond what science can achieve, the in vitro technology is the same we have been using for nearly thirty years. The principle of pre-implantation genetic diagnosis has been established, and also, as we have seen, the principle of using it for more than screening out serious illnesses. What we do with it is up to us; the mechanism is already in place.
The second problem involves the extra embryos. It amazes us that so many people have decided to make embryos and then deep-freeze the children God has given them, their flesh and blood, members of their families — as if they were retirement savings in the bank or leftovers from Sunday lunch. Some people now use the term “Popsicles” to describe these frozen embryo children. That trivializing word shows how far we have already come toward turning our children into commodities.
If you aren’t pro-life, freezing embryos may seem to make good sense. If life does not begin in any morally important sense until some later stage, making extra embryos and freezing them in case they are ever wanted seems convenient, minimizes cost, and cuts down unpleasant treatment for the woman involved. “Popsicles” make sense for people who think like that.
But how can “Popsicles” make sense to people like us who believe that every human life begins at conception/fertilization, and that these tiny deep-frozen human beings therefore bear the image of God?
Some have pointed out that a surprisingly high number of naturally conceived embryos don’t make it to live birth and often die before they implant. That may seem like an appealing argument in favor of not taking embryos very seriously, as if the fact that many of them die in the womb frees us to take risks with them. Yet once you think about it, such an argument loses much of its appeal.
Pope John Paul II on In Vitro
The various techniques of artificial reproduction, which would seem to be at the service of life and which are frequently used with this intention, actually open the door to new threats against life. Apart from the fact that they are morally unacceptable, since they separate procreation from the fully human context of the conjugal act, these techniques have a high rate of failure: not just failure in relation to fertilization but with regard to the subsequent development of the embryo, which is exposed to the risk of death, generally within a very short space of time. Furthermore, the number of embryos produced is often greater than that needed for implantation in the woman’s womb, and these so-called “spare embryos” are then destroyed or used for research which, under the pretext of scientific or medical progress, in fact reduces human life to the level of simple “biological material” to be freely disposed of.
What about the high rates of babies and young children who die through famine and disease in primitive parts of the world? Does that make them less valuable? As we know too well, one day we shall all die. Christians know something about why we die (ultimately, because of sin), and the hope we have (of the resurrection). As George Bernard Shaw once said, the “ultimate statistic” is that “one out of one dies.” Some die very, very young; some in advanced age. Yet all are precious, made in the image of God. And all are 100 percent human!
WEIRDER SCENARIOS
Plenty of other options exist. The in vitro technique allows for endless flexibility.
John and Sue may decide to have a child and to use in vitro because they have problems conceiving naturally, using their “own” genetic material, his sperm and her egg. Or they may decide to use one or other or both gamete(s) from “donors,” either friends or someone found through Internet searches and the placing of ads. In either case, they may decide to ask another woman, a surrogate, to be the womb-provider for their child so that Sue does not have to give up her high-paying job (or if she does not want to face the demands of carrying the child).
The Egg Trade
Several years ago I took part in a PBS Frontline television program that examined in vitro and the ways it was being used. The program focused on a lesbian couple and their plan to use in vitro to have children — taking it in turns and searching for sperm donors on the Internet. It is not difficult to find well-qualified donors for sperm, all the way up to Nobel prize winners and sports stars.
Buying eggs is more complicated, since it is much more difficult for women to “donate” them. Campus newspapers around the country now regularly carry ads seeking coeds as donors and offering five to ten thousand dollars and more — up to $100,000, apparently, for tall, attractive, high-intelligence women at Ivy League schools. Colleges have begun to place notices about egg donation on student employment bulletin boards.
NIGEL CAMERON
Part of our problem lies in the fact that those who made the case for this technology back in the 1970s and 1980s were not arguing for quality control, or “spare” embryos for research or freezing. They did not make a case for splitting parenting into three so that busy people with money and/or not-so-good genes could have brilliant children with minimum interruption to their lifestyles. That would not have gained much public sympathy! The infertility case may have been presented as a “good” one, yet the technology has let loose its own values and is placing wholly new pressures, for example, on single Christian women who wish they had babies but who have no more interest in marriage than they have in casual sex. And the scene is set for more sophisticated temptations: for increasingly detailed quality control before implantation; for couples to get “better” babies by using other people’s gametes; for busy lifestyles to lead to more use of surrogacy. “Our children are creations, not commodities,” said President Bush. It’s clear that the difference is becoming blurred.
A Memorable Phone Call
I shall never forget the call. It came one morning during term and while I briefly visited my office between classes at Trinity Evangelical Divinity School. The call came from an elder at a big evangelical church, who said it was urgent. So I listened.
He needed advice about a woman in the church. She was fortyish, a member of the choir, pregnant, and had been told she had to stay in the hospital for the rest of the pregnancy because of pre-eclampsia (high blood pressure). Should the deacons’ fund help with her medical costs?
I waited because I felt sure there had to be more to the story; there was. He had been visiting patients in the hospital and had learned she was in his church, so he had stopped by her room. He introduced himself and said he did not think he knew her husband. “Oh, I’m not married,” she quickly answered. He felt embarrassed and made a comment like, “I’m sorry; I suppose accidents happen.”
“This wasn’t an accident!” she replied indignantly. “And I wouldn’t dream of sleeping with a man outside marriage. This is a test-tube baby.”
Still the story went on. This single woman had gone to a pastor for counsel. She desired to have a baby. She did not know anyone she wanted to marry. She certainly would not have sex with someone outside marriage. And so the pastor suggested to her that in vitro fertilization offered the answer to her problems. No need for marriage, no need for sex; a nice, clean, clinical way of making babies.
I told the elder that I thought they should help with her costs (her insurance had run out), not least as the church might be legally liable, since it had advised her to get pregnant that way.
It gets worse. A year later I taught a grad class in bioethics. One evening’s lecture focused on the ethics of in vitro fertilization. I used the story of the church elder and the choir member to help make my point. Afterwards a grad student, single, in her thirties, took me aside to tell me how unfeeling I was to discuss the subject like that. She has more than one friend, she told me, who had considered in vitro for just the same reason — to have a baby without getting married or having to have sex outside marriage. How could I say that was wrong?
NIGEL CAMERON
WHY IT MATTERS SO MUCH
In vitro has been around for a generation, and screening techniques that already enable us to pick positive characteristics in our babies are getting more sophisticated every day. And we are getting used to these ways of thinking. So when we move further up the steep curve of discovery and commercialization, it is going to be ever more difficult to say “No!”
When tomorrow’s technologies come on line, we need to be ready, and we have so much ground to make up. The other side — the people who don’t care, who will profit, or who positively favor reshaping our human nature — already are in place.
Already they use the phrase “taking control of our own evolution.” They use terms like “transhumanism” and “posthumanism.” A blue baby? A baby with wings? You choose. All of a sudden, we have in our hands technology that makes us the subject of our experiments and remodeling.
That’s what C. S. Lewis meant by his prophetic phrase “the abolition of man.” We shall have in our power the technology to abolish “man” as we have known the human species, and turn ourselves into something else.
Every mother wants the best for her baby. Every mother dreams of her child having every chance for health and happiness. And so, she prays and plans the way for that little one.
Kate is one such mother. Her first three children had been healthy, and she felt sure her next baby would be too. She didn’t want to have the amniocentesis procedure in order to avoid even the slightest risk that the insertion of the needle into her uterus would cause her to miscarry. When doctors told her there was a new way to assess the chance of abnormalities with no risk of miscarriage — a blood test and a special sonogram — Kate happily made the appointment.
The results signaled that her unborn child had a high chance of having Down syndrome. Suddenly, Kate was catapulted into a growing group of prospective parents who must wrestle with end-of-life decisions before their child takes his first breath.
Who would have thought a decade ago that a simple blood test could reveal so much? Who would have imagined that the resolution on sonograms would become so detailed that the smallest of abnormalities could be detected? Today, high-resolution sonograms can detect everything from brain cysts to a cleft palate. Most couples appreciate having the new information . . . but the choices it foists on them force them to carry tremendous burdens.
A choice such as Kate and her husband face.
What defect gives reason enough to end a pregnancy that had been very much wanted? Some defects could be partly treated, but doctors and genetic counselors often leave couples alone for the hard conversations about abortion or how having a child with a disability would affect the family. Kate and her husband wrestled over what to do. Finally, she ended her pregnancy. “It was the hardest decision I ever had to make,” she said.
I wonder what made Kate decide to abort her unborn child with Down syndrome? Did she think he would find no happiness in life? Or did she worry about the burden this young life would place on her family? Was it motivated by a fear of financial strain? Even some doctors who perform abortions feel uncomfortable as some women choose to quietly abort fetuses with relatively minor defects.
As a person with a serious disability, this all makes me very nervous. I see a grass-roots eugenics movement beginning to evolve that ultimately will lead to a greater intolerance of disabilities. Our society has a fundamental fear of disability, and we are letting that fear drive everything from laws and policies to the quiet hints in ob-gyn offices that an unborn child is “better off dead than disabled.”
I wish people would see that a disability can provide the passport into a richer life and a deeper happiness than Kate would ever dream for her child. James 1:2 – 5 says, “Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.”
True, a disability is hard — but it can also powerfully unite a family. It can refine a family’s character and set of values. It can force one to see the joy in simple achievements and pleasures. A disability can foster faith, a deeper prayer life, and a respect for God and his Word. Most of all, it can force us into the arms of the Lord of grace: “But this happened that we might not rely on ourselves but on God, who raises the dead” (2 Corinthians 1:9). And that’s a good thing. A very good thing.
Our fixation on perfection is eating away at the human soul. A better fixation might be 2 Corinthians 4:18, “So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” Like me with quadriplegia, it’s something people with Down syndrome do every day.
JONI