The Future (44 page)

The authorities in charge of the Olympics and other athletic competitions have been forced into a genetic and biochemical arms race to develop ever more sophisticated methods of
detecting new enhancements that violate the rules. What if the gene that produces extra EPO is spliced into an athlete’s genome? How will that be detected?

At least one former Olympic multiple gold medal winner, Eero Mäntyranta, the Finnish cross-country skier, was found years later to have a
natural
mutation that caused his body to produce more than the average EPO—and thus
produce more red blood cells. Clearly, that cannot be considered a violation of Olympic rules. Mäntyranta competed in the 1960s, before the gene splicing technique was available. But if future Olympians show up with the same mutation, it may be impossible to determine whether it is natural or has been artificially spliced into their genomes. The splicing could be detected now, but scientists say that when the procedure is perfected, Olympic officials may not be able to make a
ruling without genetic testing of the athlete’s relatives.

In another example, scientists have now discovered ways to manipulate a protein
called myostatin that regulates the building of muscles. Animals in which myostatin is blocked develop unnaturally large and strong muscles throughout their bodies. If athletes are genetically engineered to enhance their muscle development, does that constitute unfair competition? Isn’t that simply a new form of doping, like the use of steroids and oxygen-rich blood injections? Yet here again, some people—including at least one young aspiring gymnast—have a rare but
natural
mutation that prevents them from producing a normal volume of myostatin, and results in supernormal musculature.

The convergence of genetic engineering and prosthetics is also likely to produce new breakthroughs. Scientists in California announced a new project in 2012 to create an artificial testicle, which they refer to as a human “
sperm-making biological machine.” Essentially a prosthesis, the artificial testicle would be injected every two months with sperm cells engineered from the man’s own adult stem cells.

Some of the earliest applications of genetic research have been in the treatment of infertility. In fact, a great deal of the work since the
beginning of the Life Sciences Revolution has focused on the beginning and the end of the human lifecycle—the reinvention of life and death.

The birth in England of
the first so-called test tube baby in 1978, Louise Brown, caused a global
debate about the ethics and propriety of the procedure—a debate that in many ways established a template for the way publics react to most such breakthroughs. In the first stage, there is a measure of shock and awe, mingled with an anxious flurry of speculation as newly minted experts try to explore the implications of the breakthrough. Some bioethicists worried at the time that in vitro fertilization might somehow
diminish parental love and weaken generational ties. But set against the unfocused angst and furrowed brows is the overflowing joy of the new parents whose dreams of a child have at last been realized. Soon thereafter, the furor dies down and fades away. As one U.S. bioethicist, Debra Mathews, put it, “
People want children and no one wants anyone else to tell them they can’t have them.” Since 1978, more than five million children have been
born to infertile people wanting children through the use of in vitro fertilization and related procedures.

During numerous congressional hearings on advances in life sciences research in the 1970s and 1980s,
I saw this pattern repeated many times. Even earlier, in 1967, the first heart transplant by
Dr. Christiaan Barnard in South Africa also caused controversy, but the joy and wonder of what was seen as a medical miracle put an end to the debate before it gained momentum. A doctor assisting in the operation, Dr. Warwick Peacock, told me that when the transplanted heart finally began to beat, Barnard exclaimed, “My God, it’s working
!” Later on, the first cloning of livestock and the commercialization of surrogate motherhood also caused controversies with very short half-lives.

Now, however, the torrent of scientific breakthroughs is leading to new fertility options that may generate controversies that don’t fade as quickly. One new procedure involves the conception of an embryo and the use of
preimplantation genetic diagnosis (PGD) to select a suitable
“savior sibling”
who can serve as an organ,
tissue,
bone marrow,
or umbilical cord stem cell donor for his or her sibling. Some bioethicists have raised concerns that
the instrumental purpose of such conceptions devalues the child, though others ask why this must necessarily be the case. In
theory, the parents can love and value both children equally even as they pursue a medically
important cure for the first with the assistance of the second. Whether truly informed consent on the part of the donor child is plausible in this scenario is another matter.

Scientists and doctors at the Department of Reproductive Medicine at Newcastle University in England outlined a procedure for creating “
three-parent babies,” to allow couples at high risk of passing on to their children an incurable genetic illness passed from their mother’s faulty mitochondrial DNA to have a healthy child. If a third person, who does not have the genes in question, allows her genes (it must come from a female donor) to be substituted for that portion of the embryo’s genome, then the baby will escape the feared genetic condition. Ninety-eight percent of the baby’s DNA would come from the mother and father; only 2 percent or so would come from the gene donor. However, this
genetic modification is one that will affect not only the baby, but all of its offspring, in perpetuity. As a result, the doctors have asked for a government review of the procedure to determine whether the procedure is acceptable under Britain’s laws.

When choices such as these are in the hands of parents rather than the government, most people adopt a different standard for deciding how they feel about the procedure in question. The great exception is the continuing debate over the ethics of abortion. In spite of the passionate opposition to abortion among many thoughtful people, the majority in most countries seem to override whatever degree of uneasiness they have about the procedure by affirming the principle that it is a decision that should properly
be left to the pregnant woman herself, at least in the earlier stages of the pregnancy.

Nevertheless, the dispersal of new genetic options to individuals is, in some countries, leading to new laws regulating what parents can and cannot do. India has outlawed genetic testing of embryos, or even blood tests,
that are designed to identify the gender of the embryo. The strong preference by many Indian parents that their next child be male, particularly if they already have a daughter, has already led to the
abortion of 500,000 female fetuses each year and a growing imbalance of the male to female sex ratio in the population. (Among the many cultural factors that have long been at work in producing the preference for baby boys is the high cost of the dowry that must be paid by the parents of a bride.) The 2011 provisional census in India, which showed a further steep decline in
the child sex ratio, led the Indian government to launch a new campaign to
better enforce the prohibition against the sex selection of children.

Most of the prenatal gender
identification procedures in India utilize ultrasound machines rather than riskier procedures such as amniocentesis, and the prevalence of advertising for low-cost ultrasound clinics is a testament to the popularity of the procedure. Although sex-selective abortions are illegal in India, proposed bans on ultrasound machines have not gained support, in part because of their other medical uses.
Some couples from India—and other countries—are now traveling to Thailand, where the successful “medical tourism” industry is offering preimplantation genetic diagnosis procedures to couples intent on having a baby boy. A doctor at one of these clinics said that he has never had a request for a female embryo.

Now a scientific breakthrough allows the testing of fetal DNA in
blood samples taken from pregnant mothers; experts say the test is 95 percent accurate in determining gender seven weeks into the pregnancy, and becomes even more accurate as the pregnancy proceeds. One company making test kits, Consumer Genetics Inc., of Santa Clara, California, requires women to sign an agreement not to use the test results for sex selection; the company has also announced that it will not sell the kits in India or China.

In 2012, researchers at the University of Washington announced a breakthrough in the sequencing of almost the entire genome of a fetus from the combination of a blood
sample from the pregnant woman and a saliva sample from the father. Although the process is still expensive (
an estimated $20,000 to $50,000 for one fetal genome—
last year, the cost was $200,000 per test), the cost is
likely to continue falling very quickly. Soon after this breakthrough was announced, a medical research team at Stanford announced an improved procedure that does not require a genetic sample from the father and is expected to be
widely available within two years for an estimated $3,000.

While so much attention has been focused on the gender screening of embryos, tremendous progress has been made on the screening for genetic markers that identify
serious disorders that might be treated through early detection. Of the roughly four million babies born in the United States each year, for example, approximately 5,000 have genetic or functional disorders amenable to treatment if discovered early. Since newborn babies are routinely screened on the day of their birth for more
than twenty diseases, the new ease with which genetic screening can be done on embryos is, in one sense, just an extension of the process already performed routinely immediately after birth.

The ethical implications are quite different, however, because of the possibility that knowledge of some condition or trait in the embryo could lead the parents to perform an abortion. Indeed, the termination of pregnancies involving fetuses with serious genetic defects is common around the world. A recent U.S. study, for example, found that more than 90 percent of American women who find that the fetus they are carrying has Down syndrome
are terminating their pregnancies. The author of an article provocatively titled “The Future of Neo-Eugenics,” Armand Leroi at Imperial College in the U.K., wrote, “The widespread acceptance of abortion as a eugenic practice suggests that there might be little resistance to more
sophisticated methods of eugenic selection and, in general, this has been the case.”

Scientists say that within this decade, they expect to develop the ability to screen
embryos for such traits as hair
and eye color,
skin complexion, and a variety of other traits—including some that have been previously thought of as behavioral but which some scientists now believe have heavy genetic components. Dr. David Eagleman, a neuroscientist at the Baylor College of Medicine, notes, “If you are a carrier of a particular set of genes, the probability that you will commit a violent crime is four times as high as it would be if you lacked those genes.… The overwhelming majority of prisoners carry these genes;
98.1 percent of death-row inmates do.”

If prospective parents found that set of genes in the embryo they were considering for implantation, would they be tempted to splice them out, or select a different embryo instead? Will we soon be debating “distributed eugenics”? As a result of these and similar developments, some bioethicists are expressing concern that what Leroi called “neo-eugenics” will soon confront us with
yet another round of difficult ethical choices.

Already, in vitro fertilization clinics are now using preimplantation genetic diagnosis (PGD) to scan embryos for
markers associated with hundreds of diseases before implantation. Although the United States has more regulations in the field of medical research than most countries, PGD is still completely unregulated. Consequently, it may be only a matter of time before a much wider range of criteria—including cosmetic
or aesthetic factors—are presented as options for parents to select in the screening process.

One question that has already arisen is the ethics of disposing of embryos that are not selected for implantation. If they are screened out as candidates, they can be frozen and
preserved for potential later implantation—and that is an option chosen by many
women who undergo the in vitro fertilization procedure. However, often several embryos are implanted simultaneously in order
to improve the odds that one will survive; that is the principal reason why multiple births are far more common with
in vitro fertilization than in the general population.

The United Kingdom has set a legal limit on the number of embryos that doctors can implant, in order to decrease the number of multiple births and avoid the associated complications for the mothers and babies—and the additional cost to the health care system. As a result, one company,
Auxogyn, is using digital imaging (in conjunction with a sophisticated algorithm), in order to monitor the developing embryos every five minutes—from the moment they are fertilized until one of them is selected for implantation. The purpose is to
select the embryo that is most likely to develop in a healthy way.

As a practical matter, most realize that it is only a matter of time before the vast majority of frozen embryos are discarded—which raises the same underlying issue that motivates the movement to stop abortions: is an embryo in the earliest stages of life entitled to all of the legal protections available to individuals after they are born? Again, regardless of misgivings they may have, the majority in almost every country have reached the conclusion that even though embryos mark the first stage of human life, the practical differences between an embryo, or fetus, and an individual are nevertheless significant enough
to allow the pregnant woman to control the choice on abortion. That view is consistent with a parallel view of the majority in almost every country that the government does not have the
right to require a pregnant woman to have an abortion.