Who Am I and If So How Many? (22 page)

If we employ utilitarian calculus to weigh the projected happiness from a cure produced by embryonic stem-cell research against a cure arising from adult stem-cell research, the latter appears to be the far better route. We should not conclude, however, that research with embryonic stem cells should cease on moral grounds. The utilitarian calculus can only consider
predicted
successes, but it provides a perspective from which to evaluate the claims, image, and societal significance of this branch of research, which has given rise to such heated controversies in recent years.

Genetic engineering is thus not only a fundamental moral question but also has significant social and ethical dimensions, the same dimensions we encounter with the next problem in modern biomedicine: the question of preimplantation diagnostics.

Ghent is a lovely seaport city in East Flanders, famous for its flower market and quaint little streets. But in 2002 and 2003, young couples flocked there for another reason. Dr Frank Comhaire, a specialist in reproductive medicine in Ghent, offered couples a very special service for a hefty fee: the choice of gender for their future child. About four hundred couples left Ghent expecting a child of the gender of their choosing.

Comhaire’s practice worked with a laboratory in Fairfax, Virginia, sending the sperm of the prospective father from Belgium to the United States, where machines sorted the sperm cells according to gender. Since male Y chromosomes glow less brightly than female X chromosomes under the light of the laser, they could be separated out using MicroSort technology. Back in Belgium, Comhaire fertilized an egg cell of the mother in a test tube with the sperm chosen by the parents, then implanted it. The Belgian doctor’s practice was part of a large-scale medical experiment under the supervision of the FDA in the United States. Sixty clinics and seven international reproductive centers took part in this largest early-gender-selection enterprise of all time. The clients hailed from Spain, Belgium, the Netherlands, Great Britain, Scandinavia, France, and Germany.

The only firm requirement for participation in this gender selection was that the future mother be between eighteen and thirty-nine years of age. Preference was given to couples who already had a child, to comply with so-called family balancing. All other restrictions were dictated by the market. The cost of the blood analysis was 1,200 euros, the freight charges and laboratory expenses for the semen were 2,300 euros, and fertilization in the test tube and subsequent implantation came to 6,300 euros. An additional 6,000 euros would buy parents a guarantee of receiving the gender of choice. The high prices helped Comhaire uphold the morality of his operation by precluding any broad
commercialization
; the more exclusive the access, he argued, the smaller the ethical precariousness of the process. ‘Family balancing’ had more to fear from the courts. In Belgium, the deliberate choice of gender for nonmedical reasons was not against the law, but the outcry of the mass media against Comhaire’s family planning made the Belgian parliament impose a legal ban.

The American partners, by contrast, remained unruffled. American law still permits test-tube gender selection of future children. The MicroSort technology, which was patented back in 1992, is a complete success. Its original purpose was to serve public health. It could be used, for example, to select girls in families in which hemophilia could be passed on only to boys. In 1995, the first child selected with this technology was born. Since 1998, the company has offered its costly service to healthy couples as well.

In 2003, a Scottish couple with three sons made headlines in Great Britain. The family’s only daughter had died in an accident, and to restore their family’s ‘female dimension,’ the couple applied for the right to conceive a child in a test tube and to select the gender. The authorities rejected the application because there were no medical grounds for the procedure. The case was taken up in the media, with the British tabloids siding with the parents (in contrast to the situation in Belgium). In March 2005, the Science and Technology Committee of the British parliament called for a change in the law that would allow parents to determine the
gender of their embryos conceived in a test tube if there were compelling grounds to do so. Although the Review of the Human Fertilisation and Embryology Act of December 2006 upheld the general ban, it is likely that exceptions could be allowed in the future.

The desires of ambitious and intrepid parents expand with the greater array of technical options. Once you can select gender, you might turn your thoughts to other features, such as eye color or height, which is a source of great concern to many experts in reproductive medicine. Will children become products, sorted by the rules of quality management and inventory control? Critics warn of ‘consumer eugenics’ and ‘designer babies.’ Like cosmetic surgery, reproductive medicine could become a rapidly growing market that introduces entirely new norms. Parents who do not submit their children to tests to safeguard their health and optimize their aesthetics could soon be regarded as either too poor or too uncaring to save their child from an uncertain fate of lesser attractiveness and diminished social opportunities in the brave new world of the beautiful. This scenario may well loom ahead.

Let us make our way through the wide-ranging ethical field of Preimplantation Genetic Diagnosis (PGD) and examine the many opportunities and risks it entails. One of the important questions of human self-awareness is the question of how one was conceived – the old-fashioned way or in a test tube? This need never matter to the individual in question, but it raises vital questions for legal scholars, doctors, and moral philosophers, who must ponder what criteria should come into play with test-tube conception and what one should be permitted to determine in creating new life.

The fertilization of egg and sperm in a test tube has become a routine procedure. The physician uses hormone injections to stimulate the development of multiple follicles of the ovaries, each containing an egg. The quality of the sperm is also tested. Once the hormone treatment takes effect, the doctor extracts the follicular fluid with an optimal total of five to twelve mature egg cells from the individual follicles, and the extracted egg cells are
fertilized with the man’s sperm in the test tube. The success rate is about 70 percent.

A newer procedure entails injecting a single (selected) sperm into the egg cell with a micromanipulator. If the egg cell has divided twice on the second day, two embryos are implanted in the woman’s womb. Another common option is implantation after the fifth day of fertilization. The spare fertilized eggs are either destroyed or frozen in liquid nitrogen (which only a few countries permit). About two weeks after the embryo has been implanted, the pregnancy can be ascertained. The rate of success of carrying a child to term is about 40 percent.

Test-tube fertilization was originally intended for two major groups of couples: those with a high familial risk of devastating hereditary diseases (so that their offspring could be tested and selected), and those unable to fertilize an egg naturally. For the latter group, the sperm may come from a different man or the egg from a different woman if warranted by the medical situation. A surrogate mother might also carry the embryo to term.

Most critics of PGD concede that an isolated case is not immoral, with the exception of those who reject PGD on religious grounds, who argue that the decision should always be in God’s hands, not in the hands of parents. The main argument against PGD is its social and ethical consequences. Early routine
inspections
of embryos could open the floodgates. The harshest critics of the procedure reject PGD as a matter of principle. They regard it as a selection of ‘life worth living’ over ‘life not worth living,’ which they consider immoral. They feel that it is not a basic right to have a healthy, nondisabled child. Less adamant critics have no problem with selection according to medical criteria; for them, the immorality begins with all the nonmedical selection points, such as gender, height, or beauty traits.

Let us consider the opinion of those who universally reject PGD. The distinction between ‘life worth living’ and ‘life not worth living’ brings to mind the barbaric atrocities of the Nazis, who classified mentally and physically disabled people as unworthy
of living and murdered them. The state set itself up as an arbiter of the worth of people’s lives and murdered people who had an interest in staying alive. These actions must be condemned in the strongest possible terms as the ultimate affront to humanity.

But the Nazis’ grave moral breaches aren’t really equivalent to PGD. As mentioned several times earlier, four- or eight-celled embryos are not people. And it is not the state intervening here; this is a choice made by expectant parents. And how can one make the case – on anything other than religious grounds – that couples don’t have a right to a healthy, nondisabled child, especially if their choice has no deleterious effects? The selection of healthy embryos may go against our traditional notion of medical unpredictability in pregnancy, but human society has already done a great deal to lessen this unpredictability by reducing infant mortality and improving obstetrics. Why cling to tradition in the case of PGD? Doesn’t this medical progress offer more advantages than disadvantages?

Critics of the procedure argue that if this kind of choice were allowed, everyone would eventually opt for it, or at least anyone who could afford it would. The element of chance that is traditionally part of bringing children into the world would then be replaced by widespread parental caprice. Developing countries, these critics argue, would have more and more boys and fewer and fewer girls, as is already the case in China, where the one-child policy has resulted in abortions to ensure that the one child be a boy. In the rich countries of the West, critics warn, there would be a predominance of tall, thin, athletic children with a healthy set of genes. The situation would be especially dire if only the upper classes could pick and choose: the rich select their looks, and the lower-class children remain ‘ugly.’ But however the situation plays out, is it really so reprehensible that it ought to be nipped in the bud on principle?

Many people are uneasy contemplating these ideas. But is unease an adequate argument? All this is still the stuff of science fiction. But once the options are out there and people are allowed to use
them, the uneasy feeling might change. Who knows whether a generation of children created by deliberate selection will one day regard this procedure without any sense of unease, as absolutely normal and natural?

Just ten short years ago, cosmetic surgery had a shady reputation; now it is – at least in some circles and social classes – virtually a matter of course. How many children will one day complain to their parents for not being ‘optimized’ early on? In the foreseeable future, PGD is sure to be followed by PGR (Preimplantation Genetic Repair) and PGO (Preimplantation Genetic
Optimization
). Defective genes in embryos could be replaced by healthy genes in the near future, which might be easier, more promising, and less expensive than treating a person who is already ill and disabled. PGO begins with well-researched genes that are
responsible
for particular traits. As far as we know today, it’s rare that a specific negative trait can be traced to a single gene, but it does occur. A single gene determines the color of our eyes. An exchange could bring about a change from blue to brown, or the other way around. The notion of PGO even inspires visionaries to picture the optimization of the human species as more peaceful and moral creatures, as though morality were no more than a genetic disposition that can be pinpointed on a single gene.

The array of conceivable options is vast. Thirty years after the birth of the first test-tube baby, Louise Joy Brown, reproductive medicine has evolved into a ‘world of miracles.’ Defending the boundary between a medical and a nonmedical selection or optimization is the easy resolution. In the case of medical selection and genetic error correction, no one is harmed, and both parents and child benefit. Aesthetic selection and correction, in contrast, entail an incalculable risk for the child; after all, the child is being shaped to fit the aesthetics of the parents, not to its own aesthetics. There is little difference of opinion about the desirability of health, but a great deal about ideals of beauty. Something I consider beautiful today may strike me as tacky or generic twenty years from now. And even if my taste remains constant, my child will not
necessarily share it. So why should society promote aesthetic selection by authorizing it? Wouldn’t it be preferable to safeguard parents from themselves and children from the taste of their parents?

That is one way of looking at it. But we can also ask to what extent it should be a legislative duty to intervene. Since when is it the task of the state to protect people from themselves? Protecting children from the values of their parents is also a tricky matter. That is exactly what happens in the case of an abortion – the mother makes decisions about the embryo’s right to life and thus about its value. We’ve seen how difficult it is to legally force the mother not to make that kind of decision.

It is far more likely that the world of reproductive medicine will generate entirely new kinds of dubious miracles. For one thing, reproductive medicine opens the door to very different timelines. In July 2005, a forty-five-year-old woman in California gave birth to a child that she had had frozen thirteen years earlier as an embryo. Her twelve-year-old twins thus got a triplet sister, because all three children come from the same fertilization process. Steve Katz, an American specialist in reproductive medicine, contends that this is only the beginning. He projects that in the future, frozen embryos could be thawed out after fifty to a hundred years, when the parents are long since dead.

Another question revolves around the issue of growing ‘
replacement
parts.’ In July 2004, the case of two-year-old Joshua Fletcher caused quite a stir in Great Britain. Joshua suffers from a rare blood disorder. His body does not produce enough red blood cells, and thus he is not expected to survive into adulthood. His life could be saved by the donation of stem cells from the body of a close relative. But because neither his parents nor his brother is a genetic match, a close relative would need to be conceived first, ideally in a test tube so that the most similar from among the potential future siblings could be selected. The idea is to implant a sibling in his mother’s womb whose stem cells would save Joshua without harming the new child. The British Human Fertilization and
Embryology Authority (HFEA) allowed the procedure as a well-founded exception. Nothing is known about the outcome.