People as Products: The Conflict Between Technology and Social

PEOPLE AS PRODUCTS: THE CONFLICT
BETWEEN TECHNOLOGY AND SOCIAL
VA L U E S
Lori B. Andrews
Lori B. Andrews, J.D., is Distinguished Professor of Law at Chicago-Kent
College of Law and the Director of the Institute of Science, Law and
Technology at Illinois Institute of Technology. Her books include: Body
Bazaar: The Market for Human Tissue in the Biotechnology Age (2001,
with Dorothy Nelkin); Future Perfect: Confronting Decisions about
Genetics (2001); The Clone Age: Adventures in the New World of
Reproductive Technology (1999); and Between Strangers: Surrogate
Mothers, Expectant Fathers, and Brave New Babies (1989).
TWENTY YEARS AGO, ON A RANCH IN ESCONDIDO,
California, Robert Klark Graham opened the Repository for Germinal
Choice, offering the sperm of Nobel Laureates and other “genius”
donors to couples who wanted to create more intelligent children. Over
200 children were born via artificial insemination using sperm from
the bank. In 1999, the doors to the repository closed.1 I’d like to be
able to report that the sperm bank suspended operations because people realized the foolishness of trying to upgrade their children, but, in
truth, the sperm bank had become quaintly obsolete. Even mainstream
infertility clinics had begun to offer sperm and egg donors with favored
traits. Dozens of websites and advertisements had appeared that mar-
1 Constance Holden, “Tracking Genius Sperm,” Science 291 (2001): 1893.
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keted gamete donors with stellar SAT scores, athletic abilities, or fabulous looks.2 All three in the same donor now commands top dollar.
We generally consider it a good thing when parents want to give their
children advantages—such as a good education—that they themselves
never had. We are comfortable with individual choices in this area. In
fact, when the U.S. Supreme Court recently held that a program providing school vouchers to parents did not violate the Establishment
Clause of the Constitution, the court underscored the importance of
parental choice in education.3 Yet at the same time, we have concerns
about social justice. We don’t just auction off places in the best universities based on sheer ability to pay. We establish scholarships so that
meritorious but poor students can attend elite, expensive colleges. Yet
this entire paradigm—individual choice coupled with a concern for
social justice—may go out the window when it comes to the biological
revolution that promises to let parents choose the very characteristics of
their children. Moreover, the business of designing our children may
turn reproduction into a form of production, profoundly changing the
nature of families and of society.
It is now possible for a child to have up to five parents—a sperm donor,
an egg donor, the surrogate mother who carries the child, and the couple who raises him. Or—if the claims of Dr. Severino Antinori are to
be believed and five women are pregnant with clones—a child might
have just one parent.4 It is also possible to generate a genetic profile of
a child before birth—or even of an embryo prior to implantation.
2 See Lori B. Andrews, The Clone Age: Adventures in the New World of Reproductive
Technology (New York: Holt, 1999).
3 Zelman, Superintendent of Public Instruction of Ohio v. Simmons-Harris, 2002 U.S.
LEXIS 4885, 70 U.S.L.W. 4683 (2002). The Court’s opinion stated that the program “provides benefits directly to a wide spectrum of individuals, defined only by
financial need and residence in a particular school district. It permits such individuals to exercise genuine choice among options public and private, secular and religious. The program is therefore a program of true private choice.”
4 In 2002, the Italian infertility specialist Dr. Severino Antinori told the press that sev-
eral of his female patients were pregnant with clones. See John Crewdson,
“Gynecologist Claims Impending Births of 5 Cloned Human Babies,” Chicago
Tribune (23 June 2002): 1.
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Consequently, notions of family are being diversified and the concept
of “normality” is being “upgraded.” Twelve percent of potential parents, for example, say they would abort a fetus with a genetic propensity toward obesity.
The Role of Prenatal Screening
Every year, approximately 60% of pregnant women (roughly 2.4 million) in the U.S. undergo prenatal screening to learn about the health
of their babies-to-be.5 Seventy percent of pregnant women view their
fetuses on ultrasound, checking to see if they are developing normally.6
A large percentage undergo a simple blood test that analyzes whether
the baby will suffer from spina bifida or anencephaly.7 Some undergo
chorionic villi sampling or amniocentesis.8 A few use the cutting-edge
technology of preimplantation screening.9 With that procedure, the
couple undergoes in vitro fertilization to create multiple embryos. Then
each embryo is tested genetically, and the couple chooses to implant in
the woman only those embryos that they consider appropriate.
Forty years ago, when prenatal screening was first introduced, bioethicist
Paul Ramsey observed that the “concept of ‘normality’ sufficient to make
5 “Dynacare, Intema Join Forces to Offer Advanced Prenatal Testing,” PR Newswire
(16 April 2001).
6 See March of Dimes Factsheet, <http://www.modimes.org/HealthLibrary/
334_580.htm> (last visited 10 July 2002).
7 In 1993 it was estimated that 50% of pregnancies in the U.S. are screened for evi-
dence of neural tube defect in the fetus. See F. J. Meaney, S. M. Riggle, G. C.
Cunningham, “Providers and Consumers of Prenatal Genetic Testing Services: What
Do The National Data Tell Us?” Fetal Diagnostic Therapy 8 (1993): 18–27.
8 The March of Dimes reports that since 1983 over 200,000 women have undergone
chorionic villi sampling. See March of Dimes Factsheet, <http://www.modimes.org
/HealthLibrary/334_578.htm> (last visited 10 July 2002). They also report that millions of women have had prenatal diagnosis by amniocentesis. See March of Dimes
Factsheet, <http://www.modimes.org /HealthLibrary/334_577.htm> (last visited 10
July 2002).
9 Francis A. Flinter, “Preimplantation Genetic Diagnosis: Needs to be Tightly
Regulated,” British Medical Journal 322 (2001): 1008.
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life worth living is bound to be ‘upgraded.’”10 That indeed has been the
case. More and more genes have been identified, and parents have begun
to screen for less and less serious disorders. Now some parents use prenatal screening and abortion not just for serious, life-threatening disorders
such as Tay-Sachs disease (which is painful for the child and generally
fatal by age three),11 but for less serious traits, diseases that are treatable,
and disorders that will not manifest until much later in life.
This trend has been exacerbated by the development of preimplantation screening. It is likely that couples will make different choices with
that technology than they did with amniocentesis. When a woman
undergoes amniocentesis in the fourth month of pregnancy, she may
have already felt the fetus move inside of her. She may have bonded
with the fetus. If she aborts based on a characteristic of the baby (such
as the fact that it is a girl), she will have no child at all. In contrast, with
preimplantation screening, the woman often creates multiple embryos
and chooses only two or three to implant. If she learns the genetic
makeup of her ten in vitro embryos through preimplantation screening, she cannot safely implant them all. It would be too dangerous for
her and for the babies to have a multiple pregnancy. Even if she underwent preimplantation screening to choose embryos that did not carry a
particular serious disorder, there might be too many such embryos. So,
she might choose to implant only the subset of embryos that have a
particular desired trait. She might, for example, implant only the males.
Already, preimplantation screening has gone beyond application to
genetic disorders that are fatal in childhood. In a controversial application described in the Journal of the American Medical Association, a cou-
10 Paul Ramsey, “Screening: An Ethicist’s View,” Ethical Issues in Human Genetics:
Genetic Counseling and the Use of Genetic Knowledge, ed. B. Hilton, D. Callahan, M.
Harris, P. Condliffe, and B. Berkley (Fogarty International Proceedings No. 13,
1973) 159.
11 Tay-Sachs disease is a fatal neurodegenerative disorder caused by a genetic mutation.
It is very common among Ashkenazi Jews. See, for example, E. C. Landel, I. H. Ellis,
A. H. Fensom, P. M. Green, and M. Bobrow, “Frequency of Tay-Sachs Disease
Splice and Insertion Mutations in the UK Ashkenazi Jewish Population,” Journal of
Medical Genetics 28 (1991): 177–80.
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ple chose to screen their embryo for a gene mutation related to
Alzheimer’s disease.12 Some considered this use unethical. Even if the
child later developed the disease, he or she would have had decades of
healthy, normal life before the disease manifested. Perhaps a cure would
even have been developed during that time.
As more and more prenatal monitoring techniques become available,
social expectations may increase the likelihood that women will use
them. “Women are increasingly pressured to use prenatal testing by
claims that undergoing these tests is the ‘responsible thing to do,’” says
disability rights activist Marsha Saxton. “Strangers in the supermarket,
even characters in TV sit-coms, readily ask a woman with a pregnant
belly, ‘Did you get your amnio?’”13 A government agency, the Office of
Technology Assessment of the U.S. Congress, exemplified this approach.
After describing new genetic tests, an Office of Technology Assessment
report stated “individuals have a paramount right to be born with a normal, adequate hereditary endowment.”14 Similarly, the report of an
NIH task force on prenatal diagnosis states: “There is something profoundly troubling about allowing the birth of an infant who is known
in advance to suffer from some serious disease or defect.”15
Saxton has pointed out the strange contradiction: just at the political
moment when laws such as the Americans with Disabilities Act are
being enacted to protect people with disabilities, genetic technologies
are aimed at preventing their birth. “It is ironic,” says Saxton, “that just
when disabled citizens have achieved so much, the new reproductive
12 Yury Verlinsky, Svetlana Rechitsky, Oleg Verlinsky, Christina Masciangelo, Kevin
Lederer, Anver Kuliev, “Preimplantation Diagnosis for Early-Onset Alzheimer
Disease Caused by V717L Mutation,” JAMA 287 (27 February 2002): 1018–21.
13 Marsha Saxton, “Disability Rights and Selective Abortion,” Abortion Wars: A Half
Century of Struggle, 1950–2000, ed. Rickie Solinger (Berkeley: University of
California Press, 1998) 374–93.
14 Office of Technology Assessment, U.S. Congress, Mapping Our Genes (1988) 84.
15 Eric Juengst, “Prenatal Diagnosis and the Ethics of Uncertainty,” Health Care Ethics:
Cultural Issues for the 21st Century, ed. J. Monagle and D. Thomasma (Rockville:
Aspen, 1997) 19, citing National Institute of Child Health and Human
Development, Antenatal Diagnosis: Report of a Consensus Development Conference 1192 NIH Publication 79-1973 (Bethesda: NIH, 1979).
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and genetic technologies are promising to eliminate their kind—people
with Down Syndrome, spina bifida, muscular dystrophy, sickle cell
anemia and hundreds of other conditions.”16 “Prenatal screening seems
to give women more power,” says disability rights activist Laura
Hershey, “but is it actually asking women to ratify social prejudice
through their reproductive ‘choice’?”17
Along those lines, some couples have a desire to use technologies to
predetermine a baby’s sex. In India, China, Taiwan, and Bangladesh,
technicians with portable ultrasound machines go from village to village scanning pregnant women who are desperate to learn whether they
are carrying a boy. Many couples abort when they fail to see a penis on
the tiny out-of-focus screen. In Bombay alone, 258 clinics offered
amniocentesis for sex selection.18 In one study of 8,000 abortions in
India, 7,999 were female fetuses,19 leading human rights activists to
protest this clear evidence of “gyne”cide. In China, when the one-child
policy was strictly enforced, families so preferred males that the sex
ratio changed to 153 males for each 100 females.20
Thirty-four percent of U.S. geneticists said they would perform a prenatal diagnosis for a family who wanted a son, and another 28% said
they would refer the couple to another doctor who would perform such
testing.21 Dorothy Wertz, the social scientist at the Shriver Center for
Mental Retardation in Waltham, Massachusetts, who conducted the
study, said the percentage of practitioners willing to respond to sex
selection request increased 10% from 1985 to 1995. “Autonomy just
16 Saxton 374–93.
17 Laura Hershey, “Choosing Disability,” Ms. (July/August 1994): 29.
18 Owen D. Jones, “Sex Selection: Regulating Technology Enabling the
Predetermination of a Child’s Gender,” Harvard Journal of Law and Technology 6
(Fall 1992): 1, 12.
19 Jones 1, 12.
20 Susan Greenholgh, “Engendering Reproductive Policy and Practice in Peasant
China: For a Feminist Demography of Reproduction,” Signs 20 (1995): 601, 627.
21 Dorothy Wertz and John C. Fletcher, “Fatal Knowledge? Prenatal Diagnosis and Sex
Selection,” Hastings Center Report 19 (May 1989): 21.
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runs rampant over any other ethical principle in this country,” Wertz
says. “And it’s only going to increase.”22
The overwhelming tilt toward boys is not as pronounced yet in the
United States as it is in other countries, but social psychologist Roberta
Steinbacher of Cleveland State University worries about the effect on
society if couples were able to predetermine their baby’s sex. Twenty-one
percent of people say they would use a sex selection technique, with 74
percent of the women and 88 percent of the men desiring to ensure their
firstborn would be a boy. Since other research reveals firstborns are more
successful in their education, income, and achievements than latterborns,
Steinbacher worries that “second class citizenship of women would be
institutionalized by determining that the firstborn would be a boy.”23
Prenatal screening can screen out certain traits, but it cannot add genetic characteristics that are not inherent in the parents’ genomes.
Consequently, some potential parents are turning to the aid of third
parties—egg donors, sperm donors, or, in the future, gene donors to
“upgrade” the traits of their children.
Donor Gametes
The designing of children started subtly, as a result of individual choices in an open market. One couple offered $50,000 for an egg donor
who was a smart, tall, Ivy League student. A man seeking to sell his
sperm for $4,000 a vial established a website with his family tree, claiming to trace his genes back to six Catholic saints and several European
royal families. Thousands of couples now turn to the Internet to find
genetic parents for their future children. They view pictures of sperm
and egg donors, listen to tapes of their voices, and review pages of
descriptions of their physical features, their hobbies, their SAT scores,
22 Jeffrey Obser, “Drawing the Line,” Newsday (16 June 1998): CO8.
23 Roberta Steinbacher, Faith D. Gilroy, and Doreen Swetkis, “Firstborn Preference
and Attitudes Toward Using Sex Selection Technology,” Journal of Genetic
Psychology, 163.2 (June 2002): 235.
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their philosophies of life. At the Ronsangels.com website, couples bid
on the eggs of attractive models.
“Why is it okay for people to choose the best house, the best schools,
the best surgeon, the best car, but not try to have the best baby possible?” the parents of a child conceived with sperm from a high-IQ donor
asked a Toronto Star reporter.24 “You look, and you eliminate things
that just aren’t interesting to you, such as, one of the profiles had on it
that they had a Richard Nixon nose,” said Jacqueline Teepen, who
appeared on Good Morning America to discuss her use of smart sperm.
“That wasn’t an interest of ours. We wanted somebody with hazel or
blue eyes, we wanted the Bachelor’s degree to be finished, working into
the Master’s or even a Ph.D. program.” “I think it’s wonderful,” she
continued. “I think the ability to select characteristics is simply wonderful.”25 Yet is it so wonderful? As with prenatal screening, will it be
used according to social biases? Already, a black woman in England
sought a white egg donor—to create a child who would be less likely to
be discriminated against.26
Victoria Kowalski was the first child born using sperm from a sperm
bank. After her birth in April 1982 to Joyce and Jack Kowalski of
Scottsdale, Arizona, her parents sold the story rights to the National
Enquirer for $20,000. “The odds are very good that our little girl will
turn out to be a genius,” Mrs. Kowalski told the National Enquirer. “I
imagine her as a child studying college textbooks.”27 The news of this
bundle of joy was received with horror by Joyce’s two children from a
previous marriage, Donna and Eric, who were being raised by their
father. Joyce had lost custody of those children after she and her new
husband, Jack, had abused them—in an effort to make them smarter.
Young Donna had been forced by her mother and stepfather to wear a
24 Katharine Lowry, “The ‘Genius’ Babies: ‘Nobel Prize’ Sperm Bank’s First Generation
of Designer Babies,” Toronto Star (12 December 1987): J1.
25 Andrews 136.
26 Nick Nuttall and Emma Wilkins, “Watchdog to Report on Designer Baby,” The
Times (London) (1 January 1994): 1.
27 Andrews 137.
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sign that said “Dummy” on her forehead. It was chilling to think about
the life ahead for Victoria—certainly in light of the expectations her
parents had for her. “We’ll begin training Victoria on computers when
she’s three, and we’ll teach her words and numbers before she can walk,”
Jack Kowalski told the National Enquirer.28
Similar enhanced expectations will come with reproductive cloning,
where a child is created to mirror the favored genetic traits of another
individual. Currently, human reproductive cloning is considered ethically unacceptable (and is banned in six states)29 in large measure
because of the physical risks. One third of the cloned offspring in animal experiments die shortly before or shortly after birth. Even if cloning
posed no physical risks, the emotional impact on the offspring could be
devastating. If a cloned person’s genetic progenitor is a famous musician or athlete, parents may exert an improper amount of coercion to
get the child to develop those talents. True, the same thing may happen
now—to a lesser degree—but the cloning scenario is more problematic. A parent might force a naturally-conceived child to practice the cello
hours on end, but will probably give up eventually if the child seems
uninterested or tone deaf. More fervent attempts to develop the child’s
musical ability will occur if the parents chose (or even paid for) genetic
material from Yo-Yo Ma. And pity the poor child who is the clone of
Michael Jordan. If he breaks his kneecap at age ten, will his parents
consider him worthless? Will he consider himself a failure?
A cloned child will be a child who is likely to be exposed to limited
experiences and limited opportunities. Even if he or she is cloned from
a person who has favored traits, the child may not get the benefit of that
heritage. The child’s environment might not provide him or her with
the drive that made the original succeed. So many clones may be created from the favored original that their value and opportunities may be
lessened. If the entire NBA consisted of Michael Jordan clones, then the
game would be far less interesting and each individual less valuable.
28 Andrews 137–8.
29 California, Iowa, Louisiana, Michigan, Rhode Island, and Virginia.
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If the original Michael Jordan died young of an inheritable cardiac disorder, then his clones would find their futures restricted. They could be
discriminated against by health insurers based on their predicted health
risks. Reproductive cloning seems to violate what philosopher Joel
Feinberg calls children’s right to an “open future.”30
Genetic Enhancement
As technology evolves, parents-to-be will have even more control over
the traits of their offspring. In a variety of animal species,31 scientists
have genetically engineered the offspring by adding an additional gene
of interest—such as an extra NR2B gene to enhance memory.32
Researchers, for example, have put a firefly gene in tobacco plants, causing them to glow in the dark, and human cancer genes in mice. Now
genetic engineering is being proposed for human embryos. It has been
suggested that people’s vision be expanded from the near ultraviolet to
the near infrared and that genes be added so that people’s urine changes
colors when they begin to get sick so that they can be diagnosed early.
30 Joel Feinberg, “The Child’s Right to an Open Future,” Whose Child? Children’s
Rights, Parental Authority, and State Power, ed. William Aiken and Hugh LaFollete
(Totoya: Rowman and Littlefield, 1980) as cited in “Cloning Human Beings,”
Volume I: Report and Recommendations of the National Bioethics Advisory Board (June
1997): 63.
31 Anthony C. F. Perry, Teruhiko Wakayama, Hidefumi Kishikawa, Tsuyoshi Kasai,
Masaru Okabe, Yutaka Toyoda, Ryuzo Yanagimachi, “Mammalian Transgenesis by
Intracytoplasmic Sperm Injection,” Science 284 (14 May 1999): 1180–3. See also
“Fertility Therapy May Aid Gene Transfer,” Science 284 (14 May 1999): 1097–8; A.
W. S. Chang, K. Y. Chong. C. Martinovich, C. Simerly, G. Schatten, “Transgenic
Monkeys Produced by Retroviral Gene Transfer into Mature Oocytes,” Science 291
(12 January 2001): 309–12; Carlos Lois, Elizabeth J. Hong, Shirley Pease, Eric J.
Brown, David Baltimore, “Germline Transmission and Tissue-Specific Expression of
Transgenes Delivered by Lentiviral Vectors,” Science 295 (1 February 2002): 868–71;
A. J. Griffith, W. Ji, M. E. Prince, R. A. Altschuler, and M. H. Meisler, “Optic,
Olfactory, and Vestibular Dysmorphogenesis in the Homozygous Mouse Insertional
Mutant Tg9257,” Journal of Craniofacial Genetic Developmental Biology 19 (1999):
157–63; K.L. Rudolph, et al., “Longevity, Stress Response, and Cancer in Aging
Telomerase-deficient Mice,” Cell 96 (1999): 701–12.
32 Joe Tsien, “Building a Brainier Mouse,” Scientific American (April 2000).
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The demand for gene insertion in embryos is likely to be quite high. In
a Louis Harris poll sponsored by the March of Dimes, 42% of potential
parents surveyed said they would use genetic engineering on their children to make them smarter, 43% to upgrade them physically. Another
survey found that over a third of people wanted to tweak their children
genetically to make sure they had an appropriate sexual orientation. With
around 4 million births per year in the U.S., that’s a market for pre-birth
genetic enhancement almost as large as that for Prozac or Viagra.
Some scientists suggest modifying people with the gene to photosynthesize so that we could get our energy from the sun like plants and not
waste money or time getting food. Law review articles are already raising questions about how to treat these new creations. If an individual
had half animal and half human genes, would he be protected by the
U.S. Constitution? When I asked my law students that question, one
replied, “If it walks like a man, quacks like a man, and photosynthesizes like a man, it’s a man.”
Germline genetic intervention on people may increase cancer risks,
sterility, or other problems in the next generation.33 Proponents of
genetic engineering of animals and humans suggest that it is no different than selective breeding. But geneticist Jon Gordon points out that
there are enormous differences when only a single gene is being introduced in a complex organism. Gordon notes that unlike selective breeding, where numerous favorable genes can be selected at one time, gene
transfer selects only one gene and tries to improve a single trait in isolation.34 Gordon notes that this single-gene approach has, “despite more
than 10 years of effort, failed to yield even one unequivocal success.”35
Instead it has produced disastrous results. When a gene shown to
induce muscle hypertrophy in mice was inserted into a calf, the animal
did exhibit the desired trait initially, but later exhibited muscle deterio-
33 Stuart Newman, “Don’t Try to Engineer Human Embryos,” St. Louis Post-Dispatch
(25 July 2000).
34 Jon. W. Gordon, “Genetic Enhancement in Humans,” Science 283 (1994): 2023–4.
35 Gordon 2023–4.
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ration.36 The animal had to be shot. In a separate experiment,
researchers genetically enhanced the wings of flies to be 300% stronger
than average. Instead of creating a superfly, these flies couldn’t even get
off the ground because they were no longer able to move their wings
fast enough.
In another study, researchers enhanced mouse embryos with an extra
NR2B gene linked to long-term memory and increased cognitive and
mental abilities. The resulting animals (called “Doogie Howser” mice)
seemed to move more quickly through mazes than the mice that had
not been altered.37 Immediately, the question arose about whether such
interventions should be undertaken on humans. Yet subsequent
research, by other scientists, learned the genetic intervention had a
downside. The Doogie Howser mice were more susceptible to longterm pain.38
Regulatory Abyss
There is an astonishing lack of oversight for the technologies used to
create children. Experimental procedures are introduced into clinical
practices without sufficient protections for the subjects of these experiments. In other areas of medicine, research is initially funded by the
federal government, and, by federal regulation, must be reviewed in
advance by a neutral committee, the Institutional Review Board, before
it can be tried on humans. Reproductive technologies have been held
hostage to the abortion debate, and pro-life lobbyists have prevented
36 Gordon 2023–4.
37 Ya-Ping Tang, Eiji Shimizu, Gilles R. Dube, Claire Rampon, Geoffrey A. Kerchner,
Min Zhuo, Guosong Liu, and Joe Z. Tsien, “Genetic Enhancement of Learning and
Memory in Mice,” Nature 401 (1999): 63–9.
38 Feng Wei, Guo-Du Wang, Geoffrey A. Kerchner, Susan J. Kim, Hai-Ming Xu,
Zhou-Feng Chen, and Min Zhuo, “Genetic Enhancement of Inflammatory Pain by
Forebrain NR2B Overexpression,” Nature Neuroscience 4 (2001): 164–9. See, also,
Rick Weiss, “Study: Rodents’ Higher IQ May Come At Painful Price,” The
Washington Post (29 January 2001): A2.
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federal funding of research on reproductive technology. Researchers can
still submit their plans to hospital and university Institutional Review
Boards, but they usually do not. In fact, according to IVF doctor Mark
Sauer, IRB review of reproductive technology proposals is so rare as to
be “remarkable.”
Even those rare studies that go before IRBs are not assessed for their
social impact. The federal regulations covering IRBs specifically state
that the reviewing committee should not address the social advisability
of the project. The law says “the IRB should not consider possible longrange effects of applying knowledge gained in the research (for example, the possible effects of the research on public policy) as among those
research risks that fall within the purview of its responsibility.”39 In one
instance, where a fertility doctor sought IRB approval, he had already
started advertising the procedure before the IRB met. The IRB chairman said, “Our feeling was that if we approved his study, at least we
could monitor his actions and collect meaningful data about the safety
and efficacy of the procedure.”40
Unlike new drugs and new medical equipment, which are regulated by
the Food and Drug Administration, no similar review of innovative
reproductive technology procedures is required. Reproductive technologies also differ from other medical procedures because they are
rarely covered by health insurance; only 15 states’ laws mandate infertility coverage.41 This means that clinics are in a fierce competition for
wealthy patients. Some clinics report as “pregnancies” small hormonal
shifts in a woman’s body that show that an embryo has briefly implanted and then been reabsorbed by her body. Others implant as many as
10 embryos or use infertility drugs indiscriminately to increase the
39 45 C.F.R. § 46.111.
40 Peter J. Paganussi, “Fertility Frontier,” letter, The Washington Post (23 February
1998): A18.
41 These states are Arkansas, California, Connecticut, Hawaii, Illinois, Louisiana,
Maryland, Massachusetts, Montana, New Jersey, New York, Ohio, Rhode
Island, Texas, and West Virginia. See <http://www.resolve.org/advocacy/facts/
stateinsurance.shtml>.
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number of babies the clinic creates, even though this increases the risk
to the woman and the fetuses. Lack of insurance coverage also means
that reproductive technology lacks an additional aspect of quality assurance. For other types of health services, health insurers, through managed care outcome studies and evaluation of services, have required
certain proof of efficacy before medical services are reimbursed.42
Additionally, medical malpractice litigation, which serves as a quality
control mechanism in other areas of health care, does not work as well
in this field. The normal success rates for the procedures (25% for in
vitro, for example) are so low that it makes it difficult to prove that the
doctor was negligent. Risks to the children may not be discernable for
many years, which may be past the period of time a statute of limitations on a legal suit has run. In “wrongful life” cases, courts have been
reluctant to impose liability upon medical providers and labs for children born with birth defects where the child would not have been born
if the negligent act had been avoided; only three states recognize such a
cause of action.43
Consequently, experimental techniques are rapidly introduced in the
more than 300 high-tech infertility clinics in the United States without
sufficient prior animal experimentation, randomized clinical trials, or
the rigorous data collection that would occur in other types of medical
experimentation.44 In vitro fertilization itself was applied to women
years before it was applied to baboons, chimpanzees, or rhesus monkeys, leading some embryologists to observe that it seemed as if women
had served as the model for the nonhuman primates.
42 Peter Kendall and William Neikirk, “Cloning Breakthrough: A Large Step on Much
Longer Road,” Chicago Tribune (25 February 1997): 1.
43 See, for example, Curlender v. Bioscience Laboratories, 165 Cal. Rptr. 477 (Cal. App.
Ct. 1980).
44 E. R. te Veld, A. L. van Baar, and R. J. van Kooij, “Concerns about Assisted
Reproduction,” Lancet 351 (1998): 1524–5.
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The Impact of the Market
All of biology is now akin to a child’s set of building blocks. Yet when
genes go from metaphor to material, a fundamental change occurs.
Unlike any other major medical dilemma in the past, however, we do
not have a sufficient body of “neutral” scientists to advise us on these
matters. A series of legal developments in the 1980s turned genetic science from a public interest activity into a commercial one. A landmark
U.S. Supreme Court case in 1980 granted a patent on a life form—a
bacteria—setting the stage for the patenting of human genes.45 Initially,
researchers assumed that peoples’ genes were not patentable since patent
law covers “inventions” and prohibits patenting the “products of
nature.”46 But by the mid-1980s, the patent office was granting an
increasing number of patents for human genes, allowing the researcher
who identifies a gene to earn royalties on any test or therapy created with
that gene.47 A second radical change in the 1980s was a series of federal
laws allowing university researchers and government researchers to reap
the profits from their taxpayer-supported research.48 This encouraged
collaborations between researchers and biotechnology companies—and a
growing interest in the economic value of genetic technologies.49
45 Diamond v. Chakrabarty, 447 U.S. 303 (1980).
46 Funk Bros. Seed Co. v. Kalo Inoculant Co., 333 U.S. 127 (1948).
47 See, for example, Rebecca S. Eisenberg, “Patenting the Human Genome,” Emory
Law Journal 39 (1990): 721.
48 15 U.S.C.S. § 3701 et seq.; 35 U.S.C. § 200 et seq. See also Sheldon Krimsky,
Biotechnics and Society (New York: Praeger, 1991).
49 In the context of advances in biotechnology, the 1980s’ legislation led to important
changes in the goals and practices of science and medicine. Leon Rosenberg, when
he was Dean of the Yale University School of Medicine, described the influence of
the biotechnology revolution on scientific research: “It has moved us, literally or figuratively, from the class room to the board room and from the New England Journal
to the Wall Street Journal.” See Leon Rosenberg, “Using Patient Materials for
Production Development: A Dean’s Perspective,” Clinical Research 33 (October
1985): 412–54. This means that at the same time that genetic technologies are being
increasingly marketed, there are fewer and fewer neutral geneticists to serve as advisors to society on the merits and impacts of these technologies.
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The new ability of any molecular biologist to patent the gene he or she
discovers and profit from it leads gene discoverers to encourage as much
use of the gene as possible. This has led to premature adoption of diagnostic tests based on the genes.50 In the future, it is likely to lead to pressure on parents-to-be to use patented genes to enhance their embryos.
The Dark Side of Designing Babies
Society does not yet have an adequate framework to develop ethical
and policy guidelines for the technologies of prenatal screening, gamete
donation, and germline genetic intervention. Yet there are reasons why
we as a society should care more about a couple’s decision to pay for a
genetic enhancement for intelligence than we would if they spent their
money on an expensive car or private tutors for their children.
The major reason for concern is that harm could be caused to the scores
of children subjected to these interventions if the predictions of risks
from the animal research hold true for humans. Moreover, these are
not just “individual” choices in isolation. If wealthy individuals genetically enhance their children to be smarter or taller, others of us may feel
pressured to do the same, just to allow our kids to keep up. “Normality”
today may be “disability” tomorrow.
Selecting traits also creates a notion, like previously-rejected caste systems or guilds, that people can be born into a particular job or purpose.
As an example, researchers have suggested cloning legless individuals on
the grounds that they would be better suited for space travel.51 But what
if the legless individual does not wish to be an astronaut?
50 See Lori B. Andrews, Future Perfect: Confronting Decisions About Genetics (New York:
Columbia University Press, 2001) 168.
51 J. B. S. Haldane, “Biological Possibilities for the Human Species in the Next
Thousand Years,” Man and His Future, ed. G. Wolstenholme, as cited in F .C.
Pizzulli, “Asexual Reproduction and Genetic Engineering: A Constitutional
Assessment of the Technology of Cloning,” Southern California Law Review
47(1974): 520, n.235.
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Moreover, the fads that will be inherent in choices of favored clones or
favored genes may narrow diversity in society. At one point, there was a
run on a sperm bank thought to have Mick Jagger’s sperm. I can imagine
(not without some horror, I might add) a gaggle of Brittany Spears clones.
Certain types of people may disappear due to market choices, just as certain plants have. On June 28, 2000, Seminis, the world’s largest vegetable seed corporation, declared that it planned to eliminate 25%, or
2,000, of its varieties as part of its “global restructuring and optimization
plan.” Seminis considers its seeds to be intellectual property. Under this
market-driven approach, Seminis prefers to sell seeds that are sterile,
because farmers cannot replant them and must purchase seeds annually.52 The corporation with power over the seeds can retire certain types
without public knowledge or oversight. The same might be done in the
future by companies with patents on genes or patents on human embryos
with particular genetic traits.
Already, there has been a patent application in England for a process to
genetically engineer mammals to produce pharmaceutical products in
their milk. The application asks for the rights to patent genetically engineered human women as well. Brian Lucas, the British patent attorney
for Baylor, said that although the focus of the current technology is
cows, the desire to cover women was put in because “someone, somewhere may decide that humans are patentable” and Baylor wants to
protect its intellectual property if that happens.53
52 “Genotypes: Earmarked for Extinction?” <http://www.gene.ch/gentech/2000/Jul
/msg00066.html>. The use of hybrid seeds to prevent saving seeds for replanting by
farmers is similar to intellectual property protection efforts aimed at requiring farmers to repurchase seeds each year.
53 Steve Connor, “Patent Plan for Breasts Set to Stir Passions,” The Independent
(London) (19 February 1992): 3.
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People as Products
The market is good for some things, but should it govern the type of
people we create? Lee Silver predicts genetic enhancements by the
wealthy might ultimately cause us to diverge into two species—the
Genrich and the Naturals, who will not be able to procreate together.54
Creating a baby is beginning to resemble buying a car, with consumer
choices about which features and extras to request. Yet children don’t
come with the same guarantees as cars or toasters do. The child of an
attractive model could be downright homely. And Nobel Prizes tend to
be awarded to people in the same laboratories rather than in the same
families. William Shockley, a Nobel laureate sperm donor, once said
that his own children were a “regrettable regression to the mean.” How
will parents feel if they pay for “smart” sperm, and “E=mc2” isn’t the
first thing out of their child’s mouth? Already, one couple sued a sperm
bank when the babies weren’t as handsome as they had expected.55
Gazing Into the Future
An art student said to me, “Conservative Republicans might want to
give children the genes for citizenship or eliminate the genes of homosexuality. But I am an artist. I would want to give my child a blue triangular head.” How should society judge such desires? Should certain
genetic manipulations be allowed and others not? Should parents be
able to buy height-enhancing genes for their embryos? Will that be
viewed more like cheating in sports or more like signing your child up
for private tennis lessons? Is giving a child a gene protective against a
deadly disease appropriate but manipulating genes (or other physical
traits) to create a blue triangular head not? What about cases that fall in
the middle—genes to prevent baldness or assure taller stature? How
54 Lee M. Silver, Remaking Eden: Cloning and Beyond in a Brave New World (New
York: Avon, 1997) 72.
55 Harnicher v. University of Utah Medical Center, 962 P.2d 67 (Utah 1998).
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will the long-term risks of inheritable changes be adequately assessed?
And should we really exercise dominion over subsequent generations,
changing their features at will?
There is reason to be concerned that the individual choice/social justice
model that society employs for parental decisions is not adequate for
the decision to influence the genetic traits of our children. In this realm,
individual choices have more impact than they do in other realms. It
makes no difference if my neighbor uses in vitro fertilization, and I created my child the old-fashioned way. But if my neighbor decides to
enhance her child genetically to be smarter or more athletic (and it
actually works), my child will seem diminished as a result.
The gaps between the genetic haves and have nots will widen since
only the very rich will be able to afford the cost of genetic enhancement for their children. In one study, it cost $300,000 to genetically
enhance a single cow.56 In humans, the cost may be even greater.
Expensive in vitro fertilization will need to be used, and the gene insertion process and implantation processes are inefficient and will require
repeated attempts before a particular couple will succeed in producing
a live child with the enhanced genetic trait.
Philosopher Dan Brock points out how one of our important social
values is equality of opportunity.57 This generally means that society is
committed to removing arbitrary grounds for the selection of people
for jobs and college admission, as well as the removal of social and environmental barriers to success.58 But if parents can purchase the traits of
their children, equality of opportunity might have to be interpreted as
equality of characteristic. This would imply that society would have to
underwrite genetic enhancement for all children.
56 Michael Hagman, “Fertility Therapy May Aid Gene Transfer,” Science 284 (1999):
1097.
57 Dan W. Brock, “The Human Genome Project and Human Identify,” Houston Law
Review 29 (1992): 7.
58 Brock 10.
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But there is no way that will happen. The price tag is just too high. In
the U.S. many people lack access to basic health care, let alone enhancements. The United States still has an infant and maternal mortality rate
that is worse than that of countries such as Korea and the Czech
Republic.59 In fact, the United States ranks 33rd in the world in infant
mortality, tied with Cuba, with 7 children out of 1000 dying in the
first year of life.60
Even if the cost of genetic enhancement were to drop substantially—
to, say, $10,000—and only 50 million Americans attempted to use it,
the overall cost would be $500 billion.61 Law professor Maxwell
Mehlman points out that since society will be unwilling to pay that
price, “genetic enhancement will not be available to all, but only to the
few who can afford to purchase it out of their personal finances.”62
Brock summarizes the situation: “The genetic knowledge and potential
therapeutic capacities that the Human Genome Project will likely bring
us will further strain our commitment to equality of opportunity and
will force new decisions about the value of equality of opportunity relative to other social and political values and institutions.”63
Making Policy for Making Babies
The ethical and policy tasks ahead of us are enormous and daunting.
This is the generation that will decide whether to embrace or reject
these technologies. Will we watch sports played by genetically enhanced
athletes? Live among cloned human beings? Mandate prenatal screening as admission standards for birth?
59 UNICEF Statistics, <http://www.childinfo.org/cmr/revis/db1.htm> (last visited 9
July 2002).
60 <http://www.childinfo.org/cmr/revis/db1.htm>.
61 Maxwell J. Mehlman, “How Will We Regulate Genetic Enhancement?” Wake Forest
Law Review 34 (1999): 686.
62 Mehlman 687.
63 Brock 12.
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The genetic choices are unlike other parental choices because they
impact us all. Consequently, no individual couple, clinic, company, or
nation should be able to decide to proceed without a full, informed,
society-wide debate on these issues. Geneticists have given us the map
to the genome, but it will be up to people like you and me to determine where that map will lead.
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