Here we enter a new realm in our journey through the fallout from agriculture and the industrialization that followed: the conflict between what we can do scientifically and what we should do morally. While the first is fairly easy to evaluate objectively—either a new technology performs its desired function or it doesn’t—the second is much less clear. The divide between these two realms, the practical and the moral, will be examined more fully in the final chapter of this book. In the case of Charlie Whitaker, though, we see a clear example of how rapidly advancing technology may be outstripping society’s ability to cope morally.
If the Whitakers had been faced with their decision a generation earlier, there would have been little choice. They could have had another child, hoping that he or she would have been a perfect match for Charlie. Given the way chromosomes are passed on during reproduction, this child would have had only a 25 percent chance of matching. Each additional child would have raised the odds of a match, but unless the Whitakers got lucky, they would have had to have at least three additional children to increase the likelihood above 50 percent. They had always wanted Charlie to have brothers and sisters, but they knew that each new child also carried an unknown risk of being born with DBA. Was it worth the risk of bringing another baby with a devastating disease into the world in order to treat Charlie? This question, seemingly a moral choice based on many unknowns, had a new answer in 2002 as a result of extraordinary advances in technology over the previous twenty-five years. There was, it turns out, a way to slant the odds in the Whitakers’ favor.
In July 1978 a baby girl was born in Manchester, England, to Lesley and John Brown. She was delivered by Cesarean section and weighed five pounds, twelve ounces at birth. Nothing particularly remarkable—another in the long line of children born that summer in England, the last before the “Winter of Discontent,” which would usher in the Thatcher government the following year. But the baby, named Louise Joy, would herald the dawn of a new era in human reproduction: Louise was the first child ever conceived by in vitro fertilization (IVF)—the original “test-tube baby.”
The doctors who performed the IVF to create Louise had been inspired to try the technique in humans by its tremendous success in other animals, particularly rabbits. While the laboratory rabbits didn’t really need any help having babies, many people did, including the Browns, who had been trying to conceive for nine years. The success of their pregnancy with Louise led Lesley and John to have another IVF baby a few years later, and the new world was off and running.
The wonderful thing about IVF is that it simply helps nature do what isn’t happening naturally. No modifications take place, and the natural sperm and egg of the parents are used in the process. Lesley, it turned out, produced perfectly normal eggs, but her fallopian tubes were blocked, preventing the eggs from encountering the sperm. By bypassing this anatomical impasse, IVF allowed Lesley to do what her body hadn’t—conceive a child with her husband. No other modifications of the normal process of human reproduction took place, and the implanted egg was every bit as much of an unknown as a child conceived by more typical methods.
Since the late 1960s, scientists had been making use of a little-known fact about animal embryos to develop a much more radical approach to IVF. Adults, children, and advanced embryos are incapable of regenerating large quantities of lost tissue—you can’t re-grow a new arm if yours is severed—but embryos at the very earliest stages of development seem to have no problem doing so. Once fertilization takes place and the fertilized egg starts to divide, there is a doubling in cell number about every eighteen hours, so that on the morning of day three after fertilization there are eight cells in the embryo (2 × 2 × 2). If a cell is removed from the embryo at this point, it seems to make no difference to the further development of the embryo—the remaining seven cells continue to divide, forming the complex structures of the advanced embryo and, ultimately, the recognizable tissues of the fetus. The cell that is removed, though, contains the complete genome of the developing embryo. With advances in molecular biology in the 1980s, particularly the development of the polymerase chain reaction, which allows small quantities of DNA from a single cell to be studied, scientists were suddenly able to read the genetic information in this cell, opening up an entirely new era of childbirth.
This technology, known as preimplantation genetic diagnosis (PGD), allows the IVF team to predict the characteristics of the future child. In the case of the Whitakers, by creating a large number of eight-cell embryos and testing all of them for the genes that would determine whether the child could serve as a match for Charlie, they could bypass the laws of probability and implant only those embryos that could serve as donors. Such a technique is not without its detractors, however, which is why the process needed to be approved by the HFEA. In the United Kingdom, unlike in the United States, all of these new technologies are strictly regulated to protect the rights of the unborn child. When the Whitakers’ application became known, many people came out in opposition. Wary of letting anyone create an “organ donor” baby, some opposed the procedure on ethical grounds. They assumed that the Whitakers were simply conceiving the child to serve as Charlie’s tissue donor, an idea the press had a field day with. The HFEA had been burned by a similar case the year before, in which it had authorized another U.K. family to use PGD to create a donor for their child and had subsequently been sued by a group calling itself the Comment on Reproductive Ethics. In part as a reaction to this, the HFEA refused to give the Whitakers permission. The new technology might have been possible, but it wasn’t acceptable, at least to many in the United Kingdom. The Daily Mail, a national newspaper, reported the decision on its front page with the headline “THE LITTLE BOY THAT SCIENCE WON’T HELP.”
The Whitakers’ physician, Mohamed Taranissi, was one of the U.K.’s most successful fertility doctors. He had been hoping to use Charlie’s case to raise awareness about the availability of such technologies, and eventually to implement them on a larger scale throughout the country. In 2002, however, many in the medical community still considered PGD very much an experimental procedure. For this reason Mr. Taranissi (British surgeons are referred to as Mr., rather than Dr.) had planned to fly in a team from a private fertility clinic in Chicago to perform the procedure in the United Kingdom. But when the HFEA failed to approve the procedure, he was faced with a dilemma. So, in the best tradition of the American can-do attitude (despite being English), he suggested to the Whitakers that they simply get on a plane, fly to Chicago, and do the whole procedure there.
Jayson and Michelle Whitaker are not rich, but when they made the decision to undertake PGD—a very expensive procedure that can cost over $30,000 per attempt, often with several attempts needed to produce a viable pregnancy—they were willing to mortgage their house and borrow money from family members. Mr. Taranissi, though, made them an offer they couldn’t refuse: he would pay for all of the expenses incurred, including the trip to Chicago. So, three weeks after hearing that their HFEA application had been rejected, they found themselves undertaking last-minute hormone tests at six A.M. in London before rushing out to Heathrow to board a plane to Chicago. The clock was ticking.
They arrived on a Saturday, and early on Monday morning Michelle’s eggs were harvested—thirteen of them. Five of these died over the next few days, leaving eight that could be fertilized. After the specialists mixed them with Jayson’s sperm, the Whitakers sat back and waited, fingers crossed, hoping for the best. On day three, six of the eight embryos were still viable, and the IVF team carefully cut one cell away from each. The genetic tests revealed that three of them were a match for Charlie—a stroke of good luck, since the chance of a match had only been 25 percent. Michelle and Jayson decided to implant two, in case one didn’t take. With the deed done, they boarded the flight back to London. On the trip home, Michelle, feeling the telltale signs of morning sickness—perhaps psychosomatic, perhaps real—knew that she was pregnant. When they arrived in the United Kingdom, they i
mmediately went to see Mr. Taranissi, and the tests of her hormone levels suggested that only one embryo had implanted. As he told them, given her earlier success at getting pregnant naturally and her relatively young age (she was thirty at the time), “if this doesn’t work for you, it won’t work for anyone.” It did.
The pregnancy was soon confirmed by ultrasound, and the Whitakers were on their way down the path toward Charlie’s treatment. At eighteen weeks they had amniocentesis performed to confirm the match but chose to learn nothing else—not even the baby’s sex. With this final confirmation, all they had left to do was wait for the child to be born. It was a normal pregnancy, the only complication being that the child didn’t turn around in the uterus; it was set to be a breech birth. For this reason the Whitakers’ obstetrician decided to perform a Cesarean delivery on June 16, 2003.
Apart from delivering a healthy baby, the goal of the medical team—and of the whole procedure—was to harvest some of the child’s cord blood. The umbilical cord, which serves as a conduit for oxygen and nutrients from mother to child, also contains a particularly rich source of hematopoietic stem cells. These cells are unique in that they can differentiate into the bone marrow cells that in turn produce normal blood cells. In effect, they serve as a proxy for a bone marrow transplant, and using them involves none of the invasive techniques used to harvest bone marrow (painful needle punches through the sternum being the normal means of bone marrow collection). After the doctor introduces them into the recipient in the same way as an ordinary blood transfusion, they manage to migrate to the bone marrow and proceed to differentiate into normal bone marrow cells. All that is required is the withdrawal of blood samples from the umbilical cord after the birth, once the cord itself has been cut. It is minimally invasive, and is now done at many births, so that cord blood can be saved for future therapeutic use. Jayson himself had been trained to collect the cord blood in case the delivery happened outside the hospital; it was simply too valuable to risk losing.
The Cesarean delivery went smoothly, and around 150 milliliters of cord blood—“half a can of Coke,” as Jayson describes it—was collected. This was immediately washed and the cells were frozen, as it would take at least six months to confirm that the baby boy, named Jamie, didn’t also have DBA. Luckily, he didn’t, and during the winter of 2003–04 the Whitakers and Mr. Taranissi began planning Charlie’s transplant.
They settled on the summer, since it was the “low season” for colds and flu, and because what would come next would be the most dangerous part of the whole procedure. Using chemotherapy, they would kill all of Charlie’s existing bone marrow cells. This was a precondition for the transplant to work; it would also, however, render him susceptible to opportunistic infections. In order to minimize the risk, he would have to be kept in isolation while it was being carried out. As Jayson described it to Charlie when they explained what was coming, they had to “put his soldiers to sleep so they wouldn’t attack Jamie’s soldiers.”
Charlie entered the hospital in late June, and the first drugs were administered soon afterward. Michelle described to me in detail how heartbreaking it was to see her five-year-old son screaming from the pain of the chemotherapy, losing weight and, eventually, his hair as he became weaker and weaker. Finally, after ten horrible days, Charlie’s neutrophil count had dropped to zero—he no longer had a functioning immune system. (Neutrophils are a particular type of white blood cell involved in the immune reponse.) At this point they could stop the chemotherapy and perform the transplant.
After all of the steps leading up to this point, the transplant itself was positively mundane: the cord blood was simply thawed out and transferred into Charlie’s body through a vein in his arm. The most unusual thing about the procedure was that it left Charlie smelling like canned corn, a result of the substance used to freeze the cells. Half an hour after it started, the procedure was over—all that was left was to wait and hope.
The cells in the transfusion would, in theory, find their way to Charlie’s bone marrow, implant themselves there, and start making blood cells again. They wouldn’t produce Charlie’s DBA cells, though—they would make healthy blood cells like Jamie’s. If it was going to work, it would happen in a matter of weeks. And it did—before the end of July, the first neutrophil appeared in Charlie’s blood tests. Hoping to reduce his likelihood of catching a hospital infection, Michelle and Jayson took Charlie home on July 30, just over a month after he had entered the hospital.
Over the next few months Charlie was slowly weaned off the drugs used to prevent rejection until, at six months after the transplant, he was off all of the medications. The ordeal of the transplant was over, but it still wasn’t certain that he had been cured. Bone marrow biopsies were performed at six months and one year to confirm that Jamie’s cells living in Charlie’s marrow were healthy, and the family waited to see if any of the symptoms of DBA would return. Luckily, they didn’t—Charlie’s hematocrit level, a measure of red blood cell production, remained within the normal range. Finally, in March 2007, Charlie was declared officially cured. The long ordeal had most definitely been worth it.
As the Whitakers were nearing the end of recounting this amazing story to me, Jayson started to talk about the difficulties they had encountered from the HFEA and other groups overseeing the ethics of PGD. As he saw it, if there was a medical solution available to a problem, you should be allowed to take advantage of it. “We’re not playing God,” he noted. “All we’re doing is changing the odds.” He had since been appointed a member of the Human Genetics Commission, set up by the U.K. government to study the risks and benefits of new genetic technologies. When I asked him how he felt about choosing other genes using PGD, he told me he was hesitant to do it for something like hair color, but that it should be allowed for genes that might affect the risk of diabetes, for instance. If the information is available, he said, people will want to have access to it.
As I was leaving the Whitakers’ house I snapped a quick picture of Charlie and his brother, who were playing in the front yard. They seemed so completely normal that I found it hard to believe what I had just heard, a tale that mixed cutting-edge science, medical ethics, and the media against the backdrop of a very sick little boy. I’d had a glimpse of a future that will become more and more common as these new reproductive technologies and genetic testing become more widespread. Charlie and Jamie seem unaffected, but the question remains: Will these medical advances end up changing us in ways that we can’t anticipate?
FIGURE 25: JAMIE AND CHARLIE WHITAKER.
AN ACCELERATING TREND
As I mentioned above, the first application of IVF to human pregnancy was in 1977. Since then the use of the technique has exploded, aided by two trends. The first is greatly improved methodology that has seen the likelihood of a successful IVF pregnancy increase dramatically since the early 1980s, so that today the chances of success—a live birth—approach 40 percent per treatment cycle in women under 35 and can be as high as 10 percent in women over 40. The second is an increase in the age at which women first get pregnant. In the United States in 1971, the average age at which a woman first became pregnant was 21.4 years, while in 2003 it was 25.2. In Britain, the figure in 2003 was 27.4 years, and in Switzerland, 28.7. This trend is even more pronounced in women with a college education. Between 1960 and 2003, the percentage of first births for women over 30 tripled from 7 percent to 22 percent, and among women with higher educational attainment (college and graduate school) it is becoming more and more common to delay the decision to have a child until after the age of 35.
Of course, fertility drops significantly after age 35, making conception less and less likely, and this explains why the use of IVF has increased so dramatically over the past twenty years. It’s estimated that as many as 4 percent of births in some European countries are IVF-assisted. More than one million babies worldwide have now been born using the procedure, and the trend is accelerating. Today, 10 percent of American women over the ag
e of 35 and 22 percent of women over the age of 40 use IVF techniques to conceive.
The cost of in vitro fertilization is typically $10,000 to $12,000 per cycle, and with increasing age and reduced likelihood of pregnancy, more cycles are required to guarantee success. This clearly isn’t something to undertake on a whim. With this in mind, many more couples are now opting for PGD in addition to IVF, hoping to increase their chances of a successful transplant. While a 2004 study in the journal Human Reproduction showed that PGD appeared to have no effect on the success rates of IVF in 37-year-old women, the procedure is still increasing at a rate of 15 to 30 percent per year, according to the Los Angeles Times. Clearly, the technique will soon be far more widespread, as birth trends project ever-growing numbers of older women conceiving via assisted reproductive technologies.
FIGURE 26: MOTHER’S MEAN AGE AT THE BIRTH OF HER FIRST CHILD, UNITED STATES AND EUROPEAN UNION, 1970–2003.
Typically, unless the parents know about a severe genetic disorder like Tay-Sachs or cystic fibrosis, all that is tested in PGD is something known as aneuploidy—an abnormal chromosome number, such as that responsible for Down’s syndrome. However, as the Whitakers’ case showed, it’s quite possible to test for other genetic traits as well. And as we enter the new era of genomic knowledge that is set to unfold over the next decade, more and more will be understood about how our genes influence a variety of traits, not just relatively rare genetic disorders. With the increasing reliance on IVF, and its expense, it seems likely that more and more couples will opt for the perceived benefits of genetic enhancement.
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