[Paleopsych] Hedgehog Review: Lori B. Andrews: People as Products: The Conflict between Technology and Social Values
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Hedgehog Review: Lori B. Andrews: People as Products: The Conflict
between Technology and Social Values
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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 ( code 2001 /code , with Dorothy Nelkin); Future
Perfect: Confronting Decisions about Genetics ( code 2001 /code ); 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 code 200 /code
children were born via artificial insemination using sperm from the
bank. In 1999, the doors to the repository closed. [3]^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. [4]^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. [5]^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. [6]^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.
The Role of Prenatal Screening
Every year, approximately 60% of pregnant women (roughly code
2.4 /code million) in the U.S. undergo prenatal screening to learn
about the health of their babies-to-be. [7]^5 Seventy percent of
pregnant women view their fetuses on ultrasound, checking to see if
they are developing normally. [8]^6 A large percentage undergo a
simple blood test that analyzes whether the baby will suffer from
spina bifida or anencephaly. [9]^7 Some undergo chorionic villi
sampling or amniocentesis. [10]^8 A few use the cutting-edge
technology of preimplantation screening. [11]^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.'"
[12]^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),
[13]^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. [14]^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?'" [15]^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." [16]^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." [17]^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."
[18]^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'?"
[19]^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, code 258
/code clinics offered amniocentesis for sex selection. [20]^18 In one
study of code 8,000 /code abortions in India, code 7,999 /code were
female fetuses, [21]^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 code 153 /code males for each code 100 /code females.
[22]^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. [23]^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 code 1985 /code to
1995. "Autonomy just runs rampant over any other ethical principle in
this country," Wertz says. "And it's only going to increase." [24]^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 code 74 /code percent of the women and code 88 /code
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."
[25]^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 $ code 50,000
/code for an egg donor who was a smart, tall, Ivy League student. A
man seeking to sell his sperm for $ code 4,000 /code 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. [26]^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." [27]^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.
[28]^26
Victoria Kowalski was the first child born using sperm from a
sperm bank. After her birth in April code 1982 /code to Joyce and Jack
Kowalski of Scottsdale, Arizona, her parents sold the story rights to
the National Enquirer for $ code 20,000 /code . "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." [29]^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. [30]^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)
[31]^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."
[32]^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,
[33]^31 scientists have genetically engineered the offspring by adding
an additional gene of interest--such as an extra NR2B gene to enhance
memory. [34]^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 code 4 /code 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. [35]^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. [36]^34 Gordon notes that this single-gene
approach has, "despite more than code 10 /code years of effort, failed
to yield even one unequivocal success." [37]^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.
[38]^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. [39]^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. [40]^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 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." [41]^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." [42]^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 code 15 /code states'
laws mandate infertility coverage. [43]^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 code 10 /code 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. [44]^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. [45]^43
Consequently, experimental techniques are rapidly introduced in
the more than code 300 /code 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. [46]^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.
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 code 1980 /code granted a patent
on a life form--a bacteria--setting the stage for the patenting of
human genes. [47]^45 Initially, researchers assumed that peoples'
genes were not patentable since patent law covers "inventions" and
prohibits patenting the "products of nature." [48]^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.
[49]^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. [50]^48 This
encouraged collaborations between researchers and biotechnology
companies--and a growing interest in the economic value of genetic
technologies. [51]^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. [52]^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. [53]^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. [54]^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.
[55]^53
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.
[56]^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. [57]^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 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 $ code 300,000
/code to genetically enhance a single cow. [58]^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. [59]^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. [60]^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. [61]^59 In fact, the United States ranks 33rd in
the world in infant mortality, tied with Cuba, with code 7 /code
children out of code 1000 /code dying in the first year of life.
[62]^60
Even if the cost of genetic enhancement were to drop
substantially--to, say, $10,000--and only code 50 /code million
Americans attempted to use it, the overall cost would be $ code 500
/code billion. [63]^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." [64]^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." [65]^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?
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.
________________________
[66]^1 Constance Holden, "Tracking Genius Sperm," Science code 291
/code ( code 2001 /code ): 1893. ] [67]^2 See Lori B. Andrews, The
Clone Age: Adventures in the New World of Reproductive Technology (New
York: Holt, 1999). ] [68]^3 Zelman, Superintendent of Public
Instruction of Ohio v. Simmons-Harris, code 2002 /code U.S. LEXIS
4885, code 70 /code U.S.L.W. code 4683 /code (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."
] [69]^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 code 5 /code Cloned Human Babies," Chicago Tribune
( code 23 /code June 2002): 1. ] [70]^5 "Dynacare, Intema Join Forces
to Offer Advanced Prenatal Testing," PR Newswire ( code 16 /code April
code 2001 /code ). ] [71]^6 See March of Dimes Factsheet,
[72]<http://www.modimes.org/HealthLibrary/334_580.htm> (last visited
code 10 /code July 2002). ] [73]^7 In code 1993 /code 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
code 8 /code (1993): 18-27. ] [74]^8 The March of Dimes reports that
since code 1983 /code over code 200,000 /code women have undergone
chorionic villi sampling. See March of Dimes Factsheet,
[75]<http://www.modimes.org/HealthLibrary/334_578.htm> (last visited
code 10 /code July 2002). They also report that millions of women have
had prenatal diagnosis by amniocentesis. See March of Dimes Factsheet,
[76]<http://www.modimes.org /HealthLibrary/334_577.htm> (last visited
code 10 /code July 2002). ] [77]^9 Francis A. Flinter,
"Preimplantation Genetic Diagnosis: Needs to be Tightly Regulated,"
British Medical Journal code 322 /code ( code 2001 /code ): 1008. ]
[78]^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. ]
[79]^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 code 28 /code (1991): 177-80. ] [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 code 287 /code (
code 27 /code February 2002): 1018-21. ] [81]^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. ] [82]^14 Office of
Technology Assessment, U.S. Congress, Mapping Our Genes (1988) 84. ]
[83]^15 Eric Juengst, "Prenatal Diagnosis and the Ethics of
Uncertainty," Health Care Ethics: Cultural Issues for the 21^st
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 code
1-192 /code NIH Publication code 79-1973 /code (Bethesda: NIH, 1979).
] [84]^16 Saxton 374-93. ] [85]^17 Laura Hershey, "Choosing
Disability," Ms. (July/August 1994): 29. ] [86]^18 Owen D. Jones, "Sex
Selection: Regulating Technology Enabling the Predetermination of a
Child's Gender," Harvard Journal of Law and Technology code 6 /code
(Fall 1992): 1, 12. ] [87]^19 Jones 1, 12. ] [88]^20 Susan Greenholgh,
"Engendering Reproductive Policy and Practice in Peasant China: For a
Feminist Demography of Reproduction," Signs code 20 /code (1995): 601,
627. ] [89]^21 Dorothy Wertz and John C. Fletcher, "Fatal Knowledge?
Prenatal Diagnosis and Sex Selection," Hastings Center Report code 19
/code (May 1989): 21. ] [90]^22 Jeffrey Obser, "Drawing the Line,"
Newsday ( code 16 /code June 1998): CO8. ] [91]^23 Roberta
Steinbacher, Faith D. Gilroy, and Doreen Swetkis, "Firstborn
Preference and Attitudes Toward Using Sex Selection Technology,"
Journal of Genetic Psychology, code 163.2 /code (June 2002): 235. ]
[92]^24 Katharine Lowry, "The `Genius' Babies: `Nobel Prize' Sperm
Bank's First Generation of Designer Babies," Toronto Star ( code 12
/code December 1987): J1. ] [93]^25 Andrews 136. ] [94]^26 Nick
Nuttall and Emma Wilkins, "Watchdog to Report on Designer Baby," The
Times (London) ( code 1 /code January 1994): 1. ] [95]^27 Andrews 137.
] [96]^28 Andrews 137-8. ] [97]^29 California, Iowa, Louisiana,
Michigan, Rhode Island, and Virginia. ] [98]^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. ] [99]^31 Anthony C. F.
Perry, Teruhiko Wakayama, Hidefumi Kishikawa, Tsuyoshi Kasai, Masaru
Okabe, Yutaka Toyoda, Ryuzo Yanagimachi, "Mammalian Transgenesis by
Intracytoplasmic Sperm Injection," Science code 284 /code ( code 14
/code May 1999): 1180-3. See also "Fertility Therapy May Aid Gene
Transfer," Science code 284 /code ( code 14 /code 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 code 291 /code ( code 12 /code January code 2001
/code ): 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
code 295 /code ( code 1 /code 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 code 19 /code (1999): 157-63; K.L. Rudolph, et
al., "Longevity, Stress Response, and Cancer in Aging
Telomerase-deficient Mice," Cell code 96 /code (1999): 701-12. ]
[100]^32 Joe Tsien, "Building a Brainier Mouse," Scientific American
(April 2000). ] [101]^33 Stuart Newman, "Don't Try to Engineer Human
Embryos," St. Louis Post-Dispatch ( code 25 /code July 2000). ]
[102]^34 Jon. W. Gordon, "Genetic Enhancement in Humans," Science code
283 /code (1994): 2023-4. ] [103]^35 Gordon 2023-4. ] [104]^36 Gordon
2023-4. ] [105]^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 code 401
/code (1999): 63-9. ] [106]^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 code 4 /code ( code 2001 /code ):
164-9. See, also, Rick Weiss, "Study: Rodents' Higher IQ May Come At
Painful Price," The Washington Post ( code 29 /code January code 2001
/code ): A2. ] [107]^39 code 45 /code C.F.R. § 46.111. ] [108]^40
Peter J. Paganussi, "Fertility Frontier," letter, The Washington Post
( code 23 /code February 1998): A18. ] [109]^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
[110]<http://www.resolve.org/advocacy/facts/stateinsurance.shtml>. ]
[111]^42 Peter Kendall and William Neikirk, "Cloning Breakthrough: A
Large Step on Much Longer Road," Chicago Tribune ( code 25 /code
February 1997): 1. ] [112]^43 See, for example, Curlender v.
Bioscience Laboratories, code 165 /code Cal. Rptr. code 477 /code
(Cal. App. Ct. 1980). ] [113]^44 E. R. te Veld, A. L. van Baar, and R.
J. van Kooij, "Concerns about Assisted Reproduction," Lancet code 351
/code (1998): 1524-5. ] [114]^45 Diamond v. Chakrabarty, code 447
/code U.S. code 303 /code (1980). ] [115]^46 Funk Bros. Seed Co. v.
Kalo Inoculant Co., code 333 /code U.S. code 127 /code (1948). ]
[116]^47 See, for example, Rebecca S. Eisenberg, "Patenting the Human
Genome," Emory Law Journal code 39 /code (1990): 721. ] [117]^48 code
15 /code U.S.C.S. § code 3701 /code et seq.; code 35 /code U.S.C. §
code 200 /code et seq. See also Sheldon Krimsky, Biotechnics and
Society (New York: Praeger, 1991). ] [118]^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 code
33 /code (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. ] [119]^50 See Lori B.
Andrews, Future Perfect: Confronting Decisions About Genetics (New
York: Columbia University Press, code 2001 /code ) 168. ] [120]^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 code 47 /code (1974): 520,
n.235. ] [121]^52 "Genotypes: Earmarked for Extinction?"
[122]<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. ] [123]^53 Steve Connor,
"Patent Plan for Breasts Set to Stir Passions," The Independent
(London) ( code 19 /code February 1992): 3. ] [124]^54 Lee M. Silver,
Remaking Eden: Cloning and Beyond in a Brave New World (New York:
Avon, 1997) 72. ] [125]^55 Harnicher v. University of Utah Medical
Center, code 962 /code P.2d code 67 /code (Utah 1998). ] [126]^56
Michael Hagman, "Fertility Therapy May Aid Gene Transfer," Science
code 284 /code (1999): 1097. ] [127]^57 Dan W. Brock, "The Human
Genome Project and Human Identify," Houston Law Review code 29 /code
(1992): 7. ] [128]^58 Brock 10. ] [129]^59 UNICEF Statistics,
[130]<http://www.childinfo.org/cmr/revis/db1.htm> (last visited code 9
/code July 2002). ] [131]^60
[132]<http://www.childinfo.org/cmr/revis/db1.htm>. ] [133]^61 Maxwell
J. Mehlman, "How Will We Regulate Genetic Enhancement?" Wake Forest
Law Review code 34 /code (1999): 686. ] [134]^62 Mehlman 687. ]
[135]^63 Brock 12. ]
References
72. http://www.modimes.org/HealthLibrary/334_580.htm
75. http://www.modimes.org/HealthLibrary/334_578.htm
76. http://www.modimes.org/HealthLibrary/334_577.htm
110. http://www.resolve.org/advocacy/facts/stateinsurance.shtml
122. http://www.gene.ch/gentech/2000/Jul/msg00066.html
130. http://www.childinfo.org/cmr/revis/db1.htm
132. http://www.childinfo.org/cmr/revis/db1.htm
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