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 marketed 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. 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.
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 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 couple 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 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 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.
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, 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 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.
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
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.
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 deterioration. 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 long-term pain. 38
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 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 long-range 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 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.
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
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.
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?
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
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
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 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.
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
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?
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.
1 Constance Holden, "Tracking Genius Sperm," Science 291 (2001): 1893. 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 several 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. 5
"Dynacare, Intema Join Forces to Offer Advanced Prenatal Testing," PR Newswire (16 April 2001). 6
See March of Dimes Factsheet, (last visited 10 July 2002). 7
In 1993 it was estimated that 50% of pregnancies in the U.S. are screened for
evidence 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, (last visited 10 July 2002). They
also report that millions of women have had prenatal diagnosis by
amniocentesis. See March of Dimes Factsheet, (last visited 10 July 2002). 9
Francis A. Flinter, "Preimplantation Genetic Diagnosis: Needs to be
Tightly Regulated," British Medical
Journal 322 (2001): 1008. 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. 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
1-192 NIH Publication 79-1973 (Bethesda: NIH, 1979). 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. 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. 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. 28 Andrews 137-8. 29
California, Iowa, Louisiana, Michigan, Rhode Island, and Virginia. 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). 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. 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. 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>. 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. 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. 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. 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. 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). 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. 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.