Chapter 5: Quality Control
I first met seven-year-old Rebecca at one of our Joni and Friends Family Retreats. As I sat near the dining hall, she headed up the sidewalk, her white cane clicking back and forth on the cement. Rebecca is a beautiful little girl with shiny black hair, a porcelain face, and an endearing smile. Rebecca became visually impaired at the age of four as a result of retinoblastoma, a degenerative eye disease. I sat with her during dinner and learned that she loves horses and has performed in a ballet, although now she’s completely blind (she reads Braille like an expert).
Later I asked her mother about Rebecca’s disability. She sighed and explained, “I had my daughter by in vitro fertilization. . . . Rebecca is a test-tube baby. The doctors say there’s no connection, but sometimes I wonder if her in vitro procedure is at the root of it all.” I wasn’t too surprised by her comment. I had heard other mothers say the same. I glanced at Rebecca. This child’s handicap may have been caused by in vitro fertilization? Rebecca bravely made her way around the Family Retreat campus, knocking her white cane against closed doors and groping along a hallway wall to get to her room. Never once did her smile dim.
Rebecca won my heart that week. So much so, that I looked up a few more facts about in vitro fertilization (IVF). One study found that “infants conceived with assisted reproductive technology were significantly more likely to have major defects than the naturally conceived infants.”
I found another article in Time magazine that stated, “Not being able to have a baby can be heartbreaking. But having too many at once can be even worse. About 20% to 35% of IVF pregnancies produce multiple fetuses, usually twins. Having more than two or three babies at once is often a medical disaster. Babies that develop in a crowded uterus or are born too early are at risk for a lifetime of developmental problems, including mental retardation, paralysis and blindness. Trying to reduce the number of fetuses through selective abortion has its own problems, not the least of which is an increased chance of miscarriage.”
In short, in vitro fertilization is fraught with problems.
But there’s a bigger problem. Every day, two-thirds of the nation’s 365 IVF clinics discard hundreds of human embryos. The embryos are treated like medical waste and often destroyed by means of incineration. About a third of the clinics do not dispose of them, but make them available for either adoption or scientific research. The author of one study, Arthur Caplan of the Center for Bioethics at the University of Pennsylvania, said, “There is certainly a lot more ambivalence about what embryos are than I had ever imagined before starting this study.”
As far as God’s Word goes, there’s no ambivalence. Psalm 139:13 – 16 records the psalmist’s passionate praise to God: “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body.”
What makes an embryo “fearfully and wonderfully made”? Job 33:4 states it plainly: “The Spirit of God has made me; the breath of the Almighty gives me life.” A human embryo bears the unmistakable imprint of the Creator. “It is he who made us, and we are his” (Psalm 100:3). We are his because he has made us. A human embryo is the possession of God — not something to be discarded into a trash can.
That’s what kept going through my mind years ago when my own quick-get-the-thermometer-stand-on-your-head effort to get pregnant never paid off. Remember that story from chapter 4? On my last visit to my infertility specialist, Dr. Fox suggested that the next step for Ken and me would be in vitro fertilization. “Would you like to move forward with that procedure?” he asked. I didn’t skip a beat but shook my head no. I would not have any unborn child of mine — that’s what an embryo is, an unborn child with a soul and a God-breathed origin — be discarded from a petri dish. Ken and I left Dr. Fox’s office with no regrets.
Yes, I am aware that thousands of women have benefited from in vitro fertilization, resulting in thousands of children. But this does not mean there’s no room for improvement. In a normal IVF procedure, over twenty embryos are created; two to four of the best are selected, and the surplus are discarded or frozen. Clinics could significantly limit the numbers of embryos created. The truth is, they don’t see the point.
Until IVF clinics begin to make changes, I will campaign for the protection of human life and tell the facts about in vitro fertilization, such as I did on PAX TV’s Faith Under Fire. The topic was stem cell research and the destruction of embryos. My opponent in the televised debate insisted that I should carry my view to its logical conclusion. “With your way of thinking, women who use in vitro fertilization are committing a criminal act. Would you make that procedure against the law?” he jabbed.
“Women who take part in in vitro fertilization aren’t criminals,” I replied. “Everyone has a hand in that procedure, all the way from the Supreme Court to local justices, doctors, clinicians, husbands, and wives. Our society has sanctioned IVF. I might not call it murder, but I certainly would call it ‘socially approved manslaughter.’ ”
And if the garden-variety IVF procedure is suspect, what of all the other quality control options now available? Like I said, there are bigger problems.
Much bigger.
JONI
Eugenics, discredited by the ghastly efficiency of Hitler’s Germany, has not in fact gone away. The legacy of the “better babies” movement has begun to reemerge. Its origins, as we noted, lay in the nineteenth-century idea that smart people should marry other smart people, and not “dilute the stock” by mixing their “germplasm” with that of their inferiors. This led to the idea that the “inferiors” should themselves be discouraged or prevented from reproducing. The reasons were partly economic, partly ideological, and tied in with the racism that affected so much of American life, since non-whites were regarded as inferior —a key reason for the laws in many states that forbade intermarriage across racial lines.
The second world war and the horrors of Nazi Germany seemed to discredit eugenics itself, and the civil rights movement effectively ended the laws on “miscegenation” (racial intermarriage).
So is it all over?
ABORTION, EUGENICS,
AND THE DISABLED
The advent of liberal abortion after the Roe v. Wade decision of the Supreme Court in 1973 has reopened a door to eugenics. Many believe that while abortion for most reasons is immoral, the “good” arguments for it include preventing the birth of a child who will carry a genetic abnormality. In other words, to have an abortion because the birth of a child will interfere with your career (or your vacation plans) is plainly wrong. But to have an abortion because the child will be born handicapped may not be so bad — and, in the eyes of many people, is good. Women who have carried their children to term despite the knowledge that they are handicapped have found themselves criticized by physicians and friends alike.
As technology improves prenatal diagnosis techniques and more women take more tests, this problem will get worse. Many people assume that it is a woman’s responsibility to make sure that she does not knowingly give birth to a handicapped child. Improvements in technology will greatly extend the range of genetic “problems” for which diagnosis will become possible, all the way to early baldness, obesity, and various conditions that don’t arise until late in life.
A further stage in this process has been reached in the development of “pre-implantation genetic diagnosis” for couples undergoing in vitro fertilization. Many physicians fertilize more eggs than they need to initiate a pregnancy, then weed out any “substandard” embryos so that only the “good” ones get implanted.
The threat of eugenics arriving through the back door of genetic testing for disease caused a big controversy in Europe. A special group established to make recommendations to the European Commission on the use of genetic tests on newborns concluded that “genetic testing is a matter of free choice and is not to be imposed.” In fact, reflecting the keen European awareness of the eugenic Nazi past, the recently written Constitution of the European Union specifically outlaws eugenics. It states: “In the field of medicine and biology the following principles must be respected . . . the prohibition of eugenic practices, in particular those aiming at the selection of persons” (Article II – 3).
Cloning Speech by President George W. Bush
One day soon, precise therapies will be custom made for our own genetic makeup. We’re on the threshold of historic breakthroughs against AIDS and Alzheimer’s and cancer and diabetes and heart disease and Parkinson’s. And that’s incredibly positive.
Our age may be known to history as the age of genetic medicine, a time when many of the most feared illnesses were overcome.
Our age must also be defined by the care and restraint and responsibility with which we take up these new scientific powers.
Advances in biomedical technology must never come at the expense of human conscience. As we seek what is possible, we must always ask what is right, and we must not forget that even the most noble ends do not justify any means.
WHITE HOUSE, APRIL 2002
At the same time, aware of the pressure to abort the unborn on eugenic grounds, a lobby on behalf of the disabled protests this growing practice at the United Nations. A representative of the World Federation of the Deaf-Blind told a UN hearing that “unborn children with disabilities must be protected from abortion.” They declared: “Disability must not become a justification for the termination of life.” A group called the Canadian Association for Living stated that prenatal genetic diagnoses are “a slippery slope toward genetic perfection.”
“When Karen Coveler and her husband began trying to have a child,” reports Amy Harmon in the New York Times, they asked for all the genetic tests possible, as she was from Ashkenazi Jewish background and that can entail some special genetic abnormalities. She was given ten tests, all of which came back negative. Still, her son Benjamin was born deaf. Karen then learned that a simple blood test could have revealed this condition during her pregnancy. Why had the hospital not done so?
“They told me that the test is not offered because the condition is not considered to be ‘serious’ or ‘life-altering,’ which I find very difficult to swallow,” she commented. “It certainly has been life-altering for myself and my son.” Observes the Times, “Too many health care providers, critics say . . . choose not to inform their patients of certain tests they have deemed inappropriate, in effect making a value judgment about abortion, disabilities and risk that patients say they have a right to make for themselves.”
Here we have an opposite example, which reveals the growing eugenic mindset encouraged by abortion screening. Karen says she would not have had an abortion, but would have been better able to care for her newborn. Tests for deafness often are not offered because advocates for the deaf claim that deafness is not a disease.
Where will this stop?
As the amount of genetic and other health information gleaned from simple tests continues to expand, what kind of choices will confront parents? And what kind of pressures may be put on them? The Times report quotes Dr. Ronald Librizzi, chief of maternal fetal medicine at Virtua Health in New Jersey, that merely offering a test can exert pressure on a couple to consider an abortion.
Another report in the Times asks the question: “What defect, if any, is reason enough to end a pregnancy that was very much wanted? Shortened limbs that could be partly treated with growth hormones? What about a life expectancy of only a few months? What about 30 years? Or a 20 per cent chance of mental retardation?” Kate Hoffman of Marblehead, Massachusetts, decided on an abortion after hearing that her much-wanted baby would have Down syndrome. They “decided that the quality of the child’s life, and that of the rest of their family, would be too severely compromised.”
The Times report continues: “Activists for the rights of the disabled say that a kind of grass-roots eugenics is evolving that will ultimately lead to greater intolerance of disabilities and less money for cures or treatments. And even some doctors who perform abortions are uncomfortable as some patients choose to quietly abort fetuses with relatively minor defects.” The number of available tests is increasing. Around a dozen are regularly offered; “more than 450 conditions, including deafness, dwarfism and skin disease, can be diagnosed by testing fetal cells, with more than 100 tests added in the last year alone.” Baylor College of Medicine, for example, is introducing “perhaps the largest panel” ever offered, including for $2,000 some fifty conditions that cause mental retardation.
The Times reports the concerns of some doctors that there is “a slippery slope from prenatal science to eugenics.” One physician cites the example of a patient born with an extra finger, surgically removed when she was a child. There was a fifty-fifty chance that her children would inherit the condition. With detection through early ultrasounds, “she has terminated two pregnancies so far, despite doctors’ efforts to persuade her to do otherwise.”
The case of minor “defects” is especially worrying. The UK has seen a major public debate over a late abortion for a cleft palate; the case has made its way into the courts in a suit that seeks to require police to prosecute the physician involved for homicide, on the ground that this disfigurement, which can be surgically corrected, cannot be regarded as a “serious abnormality” (which the UK law requires to justify a late abortion). The case was filed by a young woman who had been born with the same condition.
EUGENICS BEFORE IMPLANTATION
The growing use of in vitro fertilization has highlighted the use of eugenic tests before embryos are even implanted. This mirrors the eugenic use of abortion, though because in some clinics it is becoming routine and does not involve the trauma of abortion, it is even more disturbing as evidence of a eugenic comeback.
From a pro-life perspective, IVF is always controversial. Many Christians (especially Roman Catholics) believe it to be unethical, however practiced. Others believe it to be a matter of conscience, but point out that some options must be ruled out: no freezing of human embryos, no creation of “extra” embryos, and no “quality control.” All the embryos created should be implanted, so that the technology follows as closely as possible how things work in nature — and we do not impose our notions of quality on these tiny human lives. As we have seen, some suspect that IVF pregnancies entail higher risks of various abnormalities, and therefore pressure for “quality control” may increase to help ensure success by generating more embryos than needed, and ensuring that only the “best” ones get implanted.
An editorial in the prestigious Journal of the American Medical Association recently explored the ethics of pre-implantation genetic diagnosis (PGD). It notes reservations about PGD since it can be used in ways that “depart from preventive medicine” — by permitting the “diagnosis” of such factors as “selection of sex, skin color, or desirable physical characteristics” or the “designing of specific characteristics of children.” The writer asks: “Is PGD the precursor of designer genetics? Where should the line be drawn?” Among the problems if this happens: “attitudes may be fostered that promote discrimination against the sick or disabled because they were not ‘designed’ properly prior to birth.”
The technology already is in place to move from eugenic abortion, and abortion before implantation, to the design of our children (which we will consider in chapter 7).
THE SILENCE OF THE CHURCH
ON IN VITRO FERTILIZATION
When did you last hear a sermon or take a Sunday school class on the rights and wrongs of test-tube babies? We have developed a mentality in the church in which we just don’t talk about things like that; we treat them as private issues for parents or as technology and medicine issues on which (unlike abortion) there exists no special Christian view. Pastors have been very reluctant to get involved in any way.
Because pastors tend to ignore the issue, young couples (and sometimes singles!) go through medical referrals, visit hospitals, and take advice from physicians alone. And we now have a generation of precedent in the church for the view that so long as it does not cause abortions, reproductive technology is all right. In vitro fertilization has built a bridgehead in Christian thinking for whatever may come next.
A Question of Conscience
Conscience operates by applying God’s Word to situations — that’s standard for Christians and non-Christians. God has written his moral law on the hearts of all men, and when society ignores either the written or unwritten Word of God, its collective conscience becomes indifferent, and eventually, dead. A true moral understanding of what is right and wrong is a result of regeneration; it reflects the working of the Spirit. When the Spirit begins working on the conscience of a society, then society begins calling things by their biblical names. Society learns that sex outside of marriage is adultery, not recreation. Abortion is seen as murder, not the extraction of fetal tissue. Cloning is just that: cloning, not somatic cell nuclear transfer. The groundwork has been completed for yet more dramatic and damaging procedures.
JONI EARECKSON TADA
Part of the challenge is in assessing something complicated. The abortion issue is, at one level, very simple: if from fertilization the tiny human being is really “one of us,” then plainly his/her life may be rightly taken only in circumstances where the life of a mother might be at risk. We lack such simplicity in our attempt to make sense of in vitro as an idea. Plainly, killing embryos for research is an abortion-related act and therefore wrong. But what about freezing them? What about risking their lives in an attempt to enable pregnancy? What about the principle of technology intervening in the sexual life of a married couple? And what about the use of “donor gametes,” sperm and eggs from other parties, whether genuinely “donated” and randomly selected, or chosen and purchased to produce a particular kind of child?
We need to examine three key elements in the toolkit to make sense of this and parallel issues.
First, there exist some very clear rights and wrongs — mainly, wrongs. Embryo killing, whether for research purposes or any other, is wrong. Embryo freezing is wrong. Exposing embryos to high risk is wrong (though that takes us to the question of what may constitute “acceptable risk” — for example, if it mirrors the risks facing the embryo in natural conception).
Second, we have the question of conscience. When we have counseled couples facing these questions for themselves, we have stressed the need to understand the technology and the ethical questions, and then make a decision in conscience before God. For example, what about “simple IVF,” as it has been called, where a married couple is able to use their own sperm and eggs? They may decide that two eggs will be fertilized and those two embryos implanted without any “quality control” being exercised. It is a matter of conscience for the couple.
Third, there remains the question of the technology itself, whether it has its “own” values or can be considered neutral. Some Christians have taken the view that in vitro is always invasive into marriage and the procreative process. Moreover, it will tend to pressure those who use it into decisions they would have chosen not to make: what to do, for example, when the physician says the embryos need to be screened to make sure they do not carry genetic defects.
There are many technical variations on the basic in vitro idea. On the “conservative” end, that may include having the husband ejaculate his semen into a condom during intercourse, and then having the physician introduce the sperm directly into the woman’s body, instead of placing the eggs in a dish. On the weirder end, it involves the commercial acquisition of gametes, sometimes on the Internet, to produce a genetically attractive child, or even the use of pre-implantation genetic diagnosis to ensure a child who could be useful for later transplants.
Another element includes “embryo adoption.” This has become a popular idea, intended to rescue frozen and otherwise unwanted embryos from clinic freezers so they can be implanted in either infertile couples or couples who wish to save the lives of these tiny humans. Christians have championed this initiative in a wonderful example of the kind of practical project that enables believers to make a difference in a fallen world. But even this effort is not without problems. Couples who might hesitate to have their embryos frozen now know they might be adopted. That can never be a justification for making embryos that cannot be implanted, and then freezing them.
Because the evangelical church has uncritically absorbed in vitro techniques, millions of Christians have learned the wrong lesson at the outset of the biotech century. For in vitro contains the seeds of what is coming next:
a willingness to hazard early human life;
experimental use of embryos;
“quality control” before implantation so that only desirable human beings reach the womb;
sale and purchase of superior gametes that have eugenic appeal; and
babies conceived so their tissue can be used in later life for transplants.
Already, Christian parents have deep-frozen thousands of their embryos. These and worse practices amount to what ethicists call an “instrumentalization” of the human person — that is, treating people as things to be used for our purposes. In parallel with our use of a “manufacturing” process to bring babies into being, we have begun to treat them as “manufactured goods.”
THE EUGENIC IMPERATIVE
It should surprise no one that advocates for the disabled have been among the most vocal in condemning eugenic uses of abortion. The deaf worry that deafness might come to be considered a disease (we already have examples of deaf couples seeking to use these technologies to ensure that they have deaf children). Couples who receive distressing news from prenatal screening tests find themselves under huge pressure to abort, even if the medical and nursing staff are genuinely open to their decision to continue with the pregnancy. Already, where a serious abnormality such as Down syndrome or cystic fibrosis is diagnosed, we have seen a very high level of abortions in response. Indeed, widespread testing during pregnancy has significantly reduced the incidence of these diseases by reducing the live births of children affected by them.
As more couples use IVF and related techniques to initiate pregnancy, they will face growing numbers of genetic tests (hundreds are now possible) increasingly offered as routine options — since the tests increase clinic income, prevent litigation, and improve overall “success rates.”
Eugenics is on the march again, destroying the “unfit” before birth — and carrying dire implications for the dignity of the handicapped and sick. It also places unconscionable pressures on Christians who use these technologies but who yet desire to welcome children as God’s gift, determined to respect the sanctity and dignity of every life.
SNOWFLAKE PARENTS
Bright and gregarious, happy-hearted and forward-thinking. That well describes my friends Mitzi and Jack. A strikingly handsome thirty-something couple, they nevertheless carry a quiet, relentless grief. They are childless. That is, until recently, when Mitzi instantly became six weeks pregnant. Almost overnight, her body swelled, her emotions hit the fan, and the only thing that satisfied at 2:00 a.m. was a Burrito Supreme from Taco Bell. One moment she was barren; the next, over a month pregnant.
Jack and Mitzi opted for an unusual procedure. Like most of us, they knew of thousands upon thousands of petri-dish embryos left over from in vitro fertilization procedures. They also knew that these tiny human embryos are, for the most part, destroyed. They discovered an organization called Snowflakes which rescues many of these embryos for “adoption” by couples like, well, Mitzi and Jack. They considered it their answer to prayer. A short time ago, doctors implanted several small embryos into Mitzi’s uterus, hoping that one of them would make her womb his (or her!) nest. Before she knew it — voila! — Mitzi is instantly a month or so pregnant and Jack is heading out at 2:00 A.M. for another run to Taco Bell.
I called Mitzi today. She just returned from her gynecologist. “I’m having twins! I can’t wait to show you the sonogram photos!” My eyes became wet at the sound of so much joy in her voice. Just a few months ago, she felt destined to be barren; today, she’s buying a twin stroller.
My heart resonates with Mitzi’s. At one time Ken and I also struggled with having no children. But thank the Lord for an organization like Snowflakes that provides a life-saving detour for these preborn children. It’s called “embryo adoption,” and it’s the old, old story of redemption; that is, the “saving of many lives” by turning tragedies into triumphs. When it comes to Jack and Mitzi’s adopted twins — children who are now growing to full term inside their new mother — I can’t help but think of Genesis 50:20. With the help of Snowflakes, a lot of tiny ones are finding new homes, for “God intended it for good to accomplish what is now being done, the saving of many lives.”
JONI