In this book, I discuss several themes. First, Alarmists impede progress in making humans better. Second, both Alarmists and Enthusiasts focus too much on genetic interventions, which, at this point, are impractical and dangerous. Third, more practical ways than genetic intervention exist to improve humans—ways we presently ignore. The next four chapters focus on such practical ways: before birth, during gestation, at birth, and during childhood.
Although this chapter is entitled “Building Better Kids: Choosing Embryos,” it could have been be entitled “How Not to Worry about Eugenics.” In bioethics, the topic is commonly called “PGD,” which stands for “preimplantation genetic diagnosis.” PGD refers to selecting healthy embryos for use in assisted reproduction.
We should discuss the idea of choosing an embryo that is healthy and not, say, blind. Is that morally permissible? Does it discriminate against existing people with disabilities?
Many couples choose to be pregnant and want a baby, but, rightly or wrongly, don’t want a baby with Down syndrome, spina bifida, or any of hundreds of congenital conditions causing life-long impairments. When given the choice, and regardless of the efforts of organizations for people with disabilities, most prospective parents choose against disability and want a “normal” baby. Unlike a typical abortion, they do not choose against continuing a pregnancy, but instead choose not to have any baby with a disability.
In doing so, are they stealth eugenicists? Revealing prejudice against people with disabilities? I don't think so. They are simply trying to be good parents who want the best for their children. Nothing could be more natural than such choices; nothing could more express the high hopes of all parents for future children.
Although no abortion is easy, choosing against a serious genetic disease is one of the easiest cases of abortion to justify. Not every family can handle raising a special-needs child. As a general rule, most families cherish the right to choose the number (and if they can choose, even the kind) of children who will make up their family.
Forty years ago, when geneticists developed the first crude tests that predicted genetic diseases, Alarmists such as Leon Kass warned of eugenics.[1] They have cried wolf so many times that their continued cries cause sophisticated people to yawn. Yet their effect lingers on average citizens, especially through movies such as GATTACA and The Island.
Disability advocates contend that such genetic testing of embryos creates a new eugenics and will result in massive deaths of fetuses that carry genes for undesirable conditions. First-trimester abortions account for 88 percent of abortions.[2] Anti-abortion advocates fear that genetic testing during this trimester will legitimize massive abortions.
At this point, I need to talk more about “eugenics” and its two meanings. Contrary to popular belief, eugenics did not start in Nazi Germany, but on Long Island, New York. Based on a smidgen of fact, it inferred many incorrect conclusions.
In 1859, Charles Darwin published On the Origin of Species, defending the evolution of humans from primates and using concepts such as competitive advantage and survival of the fittest. Because it contradicted the biblical story of creation of Adam and Eve, Darwin’s book took decades for people to accept (even today, some still do not accept it).
In the late 1880s, Darwin’s cousin Francis Galton invented “eugenics” (literally, good birth) and championed maximal births by the most “fit” people, as well as sterilization or voluntary abstinence of “unfit” people. By 1905, eugenic organizations had sprung up in Europe, Japan, and Scandinavia, but especially on Long Island. U.S. politicians and geneticists urged “eugenic marriages” and sterilization of the unfit; they worried that incoming hordes of Irish, Italian, Chinese, and African immigrants, who tended to have large families, undermined the WASP-ish “breeding stock” of America.
Because of these ideas, thirty-one states passed laws allowing involuntary sterilization of “mental defectives.” By 1941, 36,000 Americans had been sterilized.[3] In Nazi Germany, Hitler gave these ideas greater power, and physicians sterilized 225,000 involuntary people in that country for perceived mental illness or perceived inheritable physical disabilities. The Immigration Restriction Act of 1924 severely limited entry into the United States of people from “inferior” lands such as Asia, Africa, southern Europe, and Ireland, while encouraging immigration from England, Germany, Switzerland, and Scandinavia.
Racism and falsehoods fueled most of the early ideas of eugenics. Early geneticists did not know that mental retardation could be caused not only by inherited conditions, but also by chromosomal breakage.[4] They did not know which human traits came from genes and which from the environment (or the interaction of both). They did not completely understand dominant and recessive genes, and the principles of population genetics, so they miscalculated how long it would take to eliminate bad genes from a population. Most egregiously, they did not understand, or care about, the degree of state coercion necessary to control reproduction in millions of people and the consequent violation of their procreative liberty. Later in the twentieth century, when China limited couples to one child, the world discovered the severity of measures needed to accomplish reproductive control of a population, for example, publicly starving or continually humiliating a couple that has two children.[5]
By 1935, the geneticist Herman J. Muller bemoaned that eugenics was “hopelessly perverted,” a cult for “advocates for race and class prejudice, defenders of vested interests of church and State, Fascists, Hitlerites, and reactionaries generally.”[6] Another leading geneticist of the time, and a founding father of statistical genetics, J. B. S. Haldane, said “many of the deeds done in America in the name of eugenics are about as much justified by science as were the proceedings of the Inquisition by the Gospels.”[7]
After World War II, bad science and the Nazi’s “Final Solution” discredited eugenics. Afterward, eugenics secretly continued in Scandinavia. In Sweden, physicians continued to forcibly sterilize citizens with low intelligence or gross physical defects until 1976.[8] Similar, secret eugenic sterilizations occurred during the same decades in China and Australia.[9] In 2011, Americans learned that about 7,000 poor black women were sterilized between 1920 and 1974 in North Carolina to reduce welfare rolls and to cleanse the gene pool of undesirable characteristics.[10]
Now we must emphasize why the past eugenics movement does not equate to increased choice today by parents against genetic disease nor to ethical attempts to enhance humans. The past eugenics movement was evil: it employed state coercion, had false views of how to eradicate genetic disease, and was racist. I call this Eugenics with a capital “E.”
What opponents today decry as “eugenics” is not the movement discussed above in which some women and couples were forced to abort their fetuses or where many were sterilized. Instead, people voluntarily choose to abort to prevent genetic disease, based not on false information about their fetuses but upon reliable data. In Australia, for example, the number of babies born with Down syndrome to mothers younger than age thirty-five dropped by half thanks to better, earlier information.[11] I call this “eugenics” with a lower-case “e.”
Is this new eugenics wrong? Critics say “yes,” for two reasons. First, when couples choose against having a child with Down syndrome, they send a message to existing people with Down syndrome that their lives are not worth living and that their parents should have aborted them. Second, it devalues people with disabilities in public policy and hence, will result in fewer resources for existing people with disabilities. So the master philosophical question here is whether a just public policy can both support parents choosing against undesirable genetic conditions and also not devalue the lives of existing people with these genetic conditions.
Pioneering British bioethicist Jonathan Glover argues that “ugly attitudes” that limit the lives of people with disabilities and express contempt for them are wrong.[12] But he also argues that parents’ preferences for a normal, rather than a disabled, child can co-exist with good attitudes.
For Glover, people can believe that first, people with disabilities have rewarding lives, that parenting children with disabilities can make families happy, and that society should provide resources for such parents and children to flourish, and second, they can still prefer to raise normal children. Just as some parents delay conception until they have the time and resources to devote to good parenting, so others test their fetus for genetic conditions to avoid a child for whom they don't have the time or money. Such delays, Glover argues, do not express contempt for poor parents or for parents who cannot delay conception.
In the same way, couples using assisted reproduction sometimes implant three or four embryos to maximize the chance of any child and sometimes all the embryos take. In the 1997 McCaughey case, where physicians stimulated Mrs. McCaughey’s ovaries to superovulate and introduced sperm, they created seven such embryos, which Mrs. McCaughey gestated to become babies. In such a case, many couples agree to selective reduction because they are not prepared to raise seven babies.
Harvard philosopher Frances Kamm distinguishes between loving acceptance of a person who already exists (“caring about” a particular, existing person) and wanting the best qualities in a person yet to exist (“caring to have” the best for a future child).[13] “One can know that one will care about someone just as much whether or not she has certain traits and yet care to have someone, perhaps for their own sake, who has, rather than lacks, those traits.” This is because, Kamm says, “Love is for a particular.” When we bear a particular child with certain qualities, we love her in all her particularity, and would not substitute another child for her. However, before the existence of a person, there is no one with these particular traits who we must lovingly accept, no one on whom we need to worry about imposing undue expectations.
So the place for high parental expectations is before the child exists. If such expectations are not fulfilled, parents will lovingly accept the existing child in its particularity, because that is the nature of human parental love, which is probably hard-wired into us. No matter what we expect, a newborn baby’s face wipes out our previous plans.
In normal life, the door of free will only open a few times. We choose to smoke or, with more difficulty, to give it up; we choose to enter a relationship or, with more difficulty, to end it; we choose a career, or with more difficulty, to change careers. But even these seemingly free choices face many constraints: pressures of time, conditioning, social roles, and limited knowledge. Experts debate how truly free even our most conscious choices are.
This point carries over to choosing traits of future children and love toward existing ones. The door remained shut for most of history about when and whether to have children. Unless one could abstain from sex, children resulted from heterosexual relationships. Only recently did contraception become available, starting with the U. S. Supreme Court’s decision in 1962 in Griswold vs. Connecticut that states could not ban physicians from prescribing contraception to married couples and single women. The Roman Catholic Church still attacks that modest advance.[14]
Now the door has been cracked a bit for a few choices about a child’s qualities. I say “cracked a bit” because everything points to a very limited ability to predict, much less control, such traits in children, most of which are multi-factorial. But if we can ethically and accurately choose traits, that choice will not take away from the love of existing parents for their particular children.
Alarmists say PGD will bring a Eugenic Armaggedon, but the actual history of PGD shows why we should be skeptical about Alarmist predictions. Why? Because the scaling problem matters.
Once we scrutinize questions of scale, PGD does not imply a new Eugenics. The numbers tell the story: IVF is expensive (about $12,000 per attempt) and few states require insurance companies to cover it. Second, it commonly fails: of 100 couples trying IVF, less than 30 will have a baby. Finally, of those thirty couples, it will be the rare couple who will use PGD, and then only if family history or age of mother leads them to suspect a genetic condition.
One of the largest institutes doing PGD over the last decades has only done PGD on 600 couples.[15] Indeed, as several experts testified to the enhancement sessions of the President’s Council on Bioethics, scientists have performed only 6,000 cases in total of PGD between 1990 and 2002.
Eliminating genetic disease from a few hundred babies a year in America is not going to affect significantly the gene pool of 300 million Americans. Why is that? The numbers are just too large. In 2007, 4,315,000 babies were born in America, up 46,000 from 2006.[16] With so many births passing along so many genes, the small numbers of PGD-related births won’t affect the huge genetic mass. In statistical terms, the law of regression to the mean applies. The genes of one baby with a different or missing gene get washed out among the millions of new babies born every year.
Next, whether it’s PGD after genetic testing, when a couple chooses against having a child who is blind or deaf for genetic reasons, critics say they “send the wrong message” to people living with these genetic diseases. Is this really so?
Selective perception may be involved here. People choose about thousands of other things that, according to the above logic, also send wrong messages. If couples choose to be childless, does that decision send the message that children are undesirable? If people don’t let children in wheelchairs play on soccer teams, does this send the wrong message to children in wheelchairs? Doesn’t having a Special Olympics send the wrong message? Doesn’t it send the wrong message not to mainstream cognitively challenged children with gifted children? Not to admit people with cognitive disabilities to medical school?
Second, couples make decisions about PGD or abortion privately. They don’t announce such decisions in the paper. As such, one wonders how such private decisions "send a message” to people with disabilities. If you don’t know that I’ve had a first-term abortion, how can my abortion send a message to you? This is like saying that a person who smokes privately in his own home sends a message that encourages everyone to smoke.
A personal view of the good life may involve raising children, raising children with disabilities, being part of a couple, living alone among others in a city, or being a hermit. Claiming that one of these views of the good life is the only good choice confuses morality with personal life, both of which differ from public policy.
Yes, it’s a personal decision to have children, but having children is a public good, and the public has a duty to subsidize public education for all children. It also has a right to tax childless couples for such education, and to tax everyone to give special assistance to parents of children with disabilities. Such taxation and subsidy explicitly values children overall and, in particular, children with disabilities, while at the same time reserving liberty to people who choose not to create and raise such children.
Finally, ask yourself this: if there is nothing wrong with spina bifida or cystic fibrosis, should medicine cease trying to cure these conditions? Isn’t it contradictory for foundations to appeal for donations for research to cure these conditions, while simultaneously saying there is nothing wrong with the people who have them?
To understand practice X in bioethics, understand the finances surrounding X. Consider who does, or does not, pay for presymptomatic tests for genetic conditions.
Genetic diseases in children cost billions of dollars a year. In a 2004 study, an underlying disorder with a significant genetic component was found in 71 percent of children admitted to a children’s hospital for over a year.[17] Any regional children’s hospital sees hundreds of children daily who suffer from genetic diseases and who come for surgery, drugs, and therapy. If all such children could have been screened in the womb or as embryos, and healthy embryos/fetuses substituted, and if the same premiums were paid by parents, insurance companies would save billions of dollars a year.
So, financially, and assuming parents may abort, for-profit insurance companies should pay for PGD of genetic disease in embryos, genetic testing during the first trimester, and newborn screening. Of course, it’s crucial to hold fast to an ethical bright line and not go from encouraging parents to test to requiring them to test, especially as a condition of keeping coverage.
Paying for genetic tests forces a dilemma on companies that offer medical coverage. Critics will say that genetic testing is only available for the rich. Working people cannot afford to pay $2,000 for a battery of fifty tests to screen out mental retardation. Practically speaking, if medical insurance does not cover such screening, only well-off couples will use it. Economic status is already associated with health, i.e., poverty is associated with disease and early death.[18]
In any effort to prevent genetic disease, physicians will play key roles. In such efforts, they can be seen as the bottleneck, preventing a Eugenic outpouring, or as outdated paternalists who wrongly impose their values on patients.
PGD is not merely a matter of choice of parents; it also involves physicians, adding another layer of complexity. Physicians must deal with malpractice and that matters to such testing.
In the United States, several parents have sued physicians for wrongful birth, where lawyers claim some action by physicians made the resulting baby less than normal. Most suits for wrongful birth involve anoxia (lack of oxygen during birth), which may cause cerebral palsy, severe retardation, or vegetative states. Another kind of suit for wrongful birth results from a failure by a physician to inform parents about a test that might have led to a decision not to carry a fetus to term.
At least 27 states allow parents to sue for wrongful birth, although Michigan and Georgia recently disallowed such suits. In 1999, the Georgia Supreme Court ruled that a couple with a child born with Down syndrome or other impairments could not sue their physician for failure to perform amniocentesis or other prenatal tests.[19]
One seminal case concerned Karen Coveler of Houston, Texas, who, at age thirty-four, had earned a doctorate in genetics and who in 2004 requested, “all the DNA tests she could to determine if she was at risk of passing on a genetic disease.” [20] Unfortunately, her physician did not offer her a test for her fetus for a genetic cause of deafness, which her son had, leaving him deaf at birth.
Some physicians don’t offer similar tests for breast cancer and mental retardation. They make a cost-benefit moral judgment that the genetic condition was not too bad or that the risk of this condition was low, and in their view, the condition did not justify an abortion. Physicians also don’t offer such genetic tests in fear that such testing will become the norm—that offering the test will soon become the standard of care, such that it is malpractice not to offer it.[21]
Consider Fragile X syndrome, a common cause of mental retardation. Unless a family has a history, fetuses are not routinely tested for this condition. Even though Fragile X affects twice as many babies as cystic fibrosis, the American College of Obstetricians and Gynecologists (ACOG) does not, as it does for cystic fibrosis, recommend that most fetuses be tested for it.[22] One critic suggests that ACOG does not do so because, if it did, malpractice claims would fare better against obstetricians who did not test.[23]
Dr. Ronald Librizzi, Chief of Maternal Fetal Medicine at a chain of New Jersey hospitals, regrets that the American College of Obstetricians and Gynecologists recommended that prospective parents test their fetus for cystic fibrosis, but is happy that his hospitals do not offer testing for Fragile X. “I just feel that some people are not ready for some of the information,” he said.[24]
All in all, progress in eliminating genetic disease via PGD has been torturously slow, completely unlike the stealth Eugenics predicted by Alarmists. Indeed, one wonders whether such alarmism hasn't made too many parents and physicians overly cautious about testing, resulting in impaired babies that might have been prevented. Sometimes, ethics is part of the problem, not the solution.
To conclude, once again we dissolve Alarmist fears by focusing on one kind of case. Choosing embryos will never create the Master Race because most couples don’t use assisted reproduction, it’s inefficient and costly, and in three decades, has only been used about 10,000 times in America among 30 million babies born. The effect of any such choices was washed away in the millions of other genes passed along.
Daniel Kevles, In the Name of Eugenic: Genetics and the Uses of Human Heredity, Harvard University Press; Reprint edition (September 1, 1995), 116.ing Man’s Estate?” Journal of the American Medical Association, 174, no. 19 (November 1971, 779–88.
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5511a1.htm
Stephen Mosher, Broken Earth: The Rural Chinese (New York: The Free Press, 1984).
Hermann Muller, Out of the Night: A Biologist’s View of the Future, (New York: Vanguard, New York, 1935); quoted in Daniel Kevles, In the Name of Eugenics, 164.
J. B. S. Haldane, “Toward a Perfected Posterity,” The World Today 45 (December 1924); quoted in Daniel Kevles, In the Name of Eugenics, 122. See also Ronald W. Clark, The Life and Work of J. B. S. Haldane, Coward-McCann, New York, 1968, 70.
Gunnar Broberg and Nils Roll-Hansen, Eugenics and the Welfare State: Sterilization Policy in Norway, Sweden, Denmark, and Finland (Lansing: Michigan State University Press, 1997; revised edition, 2005).
Gary Sigley, "'Peasants into Chinamen': Population, Reproduction and Eugenics in Contemporary China." Asian Studies Review, no. 3 (1998): 309–38; Imperfect Conceptions: Medical Knowledge, Birth Defects, and Eugenics in China (New York: Columbia, 1998); Stephen Garton, "Sound Minds and Healthy Bodies: Re-Considering Eugenics in Australia, 1914–1940," Australian Historical Studies 26 (1994): 163–81.
Kim Severson, “Payment Set for Those Sterilized in Program,” New York Times, January 11, 2012, A13.
Julie Robotham, “Young Women Seeking Prenatal Tests,” Sydney Morning Herald, August 30, 2004.
Jonathan Glover, Choosing Children: Genes, Disability, and Design, (New York: Oxford University Press, 2007).
Frances Kamm, “What is and is Not Wrong with Enhancement?” Faculty Research Working Papers Series. John F. Kennedy School of Government, Harvard University, May 2006, RWP06-020, 28.
Manya A. Brachear , “Document Clarifies Church's Position on Bioethical Issues,” ChicagoTribune, December 13, 2008 (also published in The New York Times on the same day).
Figure is through December, 2003, for the Genetics & IVF Institute of Fairfax, Virginia. See: http://www.givf.com/pgt_sepv.cfm
National Center for Health Statistics. http://www.cdc.gov/nchs/pressroom/04facts/pregestimates.htm and http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56_21.htm
S. E. McCandless, et al., “The Burden of Genetic Disease on Inpatient Care in a Children's hHspital,” American Journal of Human Genetics (April 2004), 74, no. 4.
Stephen Isaacs and Steven Schroeder “Class—The Ignored Determinant of the Nation’s Health,” New England Journal of Medicine, 351:11, Sept. 9, 2004, 1137–41.
“High Court Rules “Wrongful Birth” Suits Invalid,” Atlanta Journal-Constitution, July 7, 1999, E1.
Amy Harmon, “As Gene Test Menu Grows, Who Gets to Choose?” New York Times, July 21, 2004, A1, A15.
Amy Harmon, “As Gene Test Menu Grows.”
Also, some data indicate that early diagnosis of cystic fibrosis will lead to decreased morbidity (illness) in people affected, but this is not so with Fragile X syndrome. Also, the genetic test for cystic fibrosis can be done on newborns.
Amy Harmon, “As Gene Test Menu Grows,” A15.
Amy Harmon, “As Gene Test Menu Grows,” A15.
Amy Harmon, “As Gene Test Menu Grows,” A15.
Amy Harmon, “As Gene Test Menu Grows,” A15.