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Eugenics—Sacred and Profane
Christine Rosen
http://www.thenewatlantis.com/archive/2/rosen.htm
It begins
innocuously enough. A six-month-old baby, once thriving and
cheerful, begins reacting differently to normal sounds such as
clapping hands or closing doors. Her parents notice that her limbs
twitch and her muscles are not developing properly. She has trouble
swallowing and shows signs of mental retardation. What they can’t
see is her compromised brain tissue, which began degenerating when
she was still in her mother’s womb. Soon their once-healthy child is
in the grips of an overwhelming illness. As the deterioration
intensifies, fatty deposits overwhelm the nerve cells in her brain,
and she experiences seizures and paralysis. Bright cherry red spots
appear on the retinas of her eyes, and she is rendered blind. Their
daughter lapses into a vegetative state, and by the age of 3 or 4,
she is dead, often of complications from pneumonia.
If ever there was a clear case for using our
knowledge of human genetics to end suffering, Tay-Sachs, a killer of
children, is it. There is no cure for the disease. A single gene
disorder, Tay-Sachs is named for British ophthalmologist Warren Tay,
who first described the cherry-red spot on Tay-Sachs victims’ eyes
in 1881, and for Bernard Sachs, a neurologist in New York who
outlined the other progressive degenerations of the disease and
noted the frequency of its occurrence among Ashkenazi Jews (Jews of
Central and Eastern European descent). The rate of Tay-Sachs disease
among Ashkenazi Jews is approximately 1 in every 3,000 births—nearly
100 times higher than other ethnic groups. Tay-Sachs is inherited in
an autosomal recessive fashion, which means that both parents must
be carriers of the defective gene to have an afflicted child. If
both parents are carriers, they have a one in four chance—for each
pregnancy—of having a child with Tay-Sachs.
Not long ago, information about a particular
ethnic group’s unique genetic characteristics was hardly so precise.
Certain diseases and disorders appeared more frequently in
particular populations: People of Mediterranean descent suffer from
the group of blood disorders known as thalassemia; those of African
descent experience higher rates of sickle cell anemia; and whites of
Northern European descent are more likely to have children with
cystic fibrosis. But it is only recently that we have gained the
power to pinpoint the genes that cause these specific conditions,
among ethnic groups and in individuals.
As a result, our attention has moved beyond
preventing germ-borne disease at the macro level—such as last
century’s crusades to eradicate diseases like smallpox or polio—to
avoiding the genetic expression of disease at the micro level—the
level of individual reproduction. In the future, an increasing
number of people will prevent a range of genetic diseases by
sidestepping the unions that create them—whether at the altar
through “premarital genetic diagnosis” of genetic abnormalities, or
in the petri dish through pre-implantation genetic diagnosis (PGD)
of embryos created using in vitro fertilization.
Only about two percent of all diseases,
including Tay-Sachs, are caused by mutations in a single gene; the
rest are the result of multiple genes acting together and in
conjunction with assorted environmental factors. But our knowledge
of both single-gene diseases and multi-gene diseases is increasing
rapidly. Genetic tests for more than 800 conditions are now
available, with more hitting the market every year. For the most
part, geneticists, physicians, and scientists are encouraging us to
use this new knowledge about ourselves and our potential offspring
to guide decisions about marriage and procreation. Why take a
chance, they say, when we can prevent the birth of more “doomed
babies”? The force of such an argument—and the terrible suffering
endured by diseased children and their families—cannot be denied.
But such genetic guarantees necessarily come
at a price—not least of which is the tacit judgment that individuals
with certain genetic conditions are not fit to live or better off
never born. As genetic testing becomes more advanced and more
widespread, the line between acting on a just concern for the
well-being of the next generation and engaging in an inhuman project
of weeding out the imperfect will become more difficult to draw.
Different communities will draw different lines for different
reasons—whether to protect the health and safety of children, to
protect the life of the unborn, to expand the reproductive freedom
of women, to heed the taboo against “playing God,” or to perfect
God’s imperfect creation with human reason and human hands. And some
of these reasons are clearly more justifiable than others. But no
community—religious or secular, sacred or profane—will use such
genetic powers without inviting the possibility of a new eugenics.
The Genetic Matchmaker
What
could be wrong with acting on our knowledge of human genetics to
prevent future suffering? This was the motivating question for Rabbi
Josef Ekstein, an ultra-Orthodox Jew in Brooklyn who, after losing
four of his own children to Tay-Sachs disease, founded Dor Yeshorim
(Hebrew for “Generation of the Righteous”) in 1983. Dor Yeshorim
representatives visit Orthodox high schools and draw blood samples
from students, who are then issued a number. The samples are
screened for genetic disease and the results stored in Dor
Yeshorim’s offices. When young Orthodox men and women reach a
marriageable age, and receive a recommendation from a shadchan,
or matchmaker, about a potential mate, they make a very important
phone call. They (or their parents) call Dor Yeshorim, which
retrieves the assigned numbers for each member of the potential
couple and checks to see if they are carriers of genetic disease. If
they are, they are told that a union is not advisable.
In effect, with one phone call, Dor Yeshorim turns young Orthodox
men and women into genetic Montagues and Capulets. The notion of
searching and finding one’s bashert, or soul mate, seems a
little less mystical in this cool-eyed context. But it is difficult
to argue with the organization’s success: In Dor Yeshorim’s first
year, Ekstein succeeded in convincing only 45 people to participate
in the program; since then, more than 135,000 people have been
tested by Dor Yeshorim offices in the United States, Europe, Canada,
and Israel. No children with Tay-Sachs disease have been born to
Ashkenazi Jews who have participated in Dor Yeshorim’s screening
program.
“I think Dor Yeshorim performs a tremendous service,” says Dr.
Fred Rosner, a professor at Mt. Sinai School of Medicine and an
important authority on Jewish medical ethics. “Screening is a
wonderful thing to do, and if you can avoid the birth of a
potentially lethally affected child, that is a good thing.” Rosner
has written about how “genetic manipulation is not considered to be
a violation of God’s natural law but a legitimate implementation of
the biblical mandate to heal.” The specific beliefs of the Orthodox
community—especially its aversion to abortion—make the screening of
parents a moral obligation. “There are Orthodox Jewish women who
refuse amniocentesis for Down Syndrome because they won’t abort,”
Rosner said. “That’s why you need screening of the parents for
carrier status.”
At first Dor Yeshorim tested only for Tay-Sachs disease, an
always-fatal illness. But it soon added testing for a range of other
conditions that are not always fatal, including conditions that are
late-onset or that range in the severity of their expression—such as
cystic fibrosis and Gaucher’s disease. Ten years ago, a spokesman
for Dor Yeshorim told the New York Times that the
organization would continue to add any and all genetic tests
available to its menu of screening options. More recently, in a
letter to a Jewish newspaper, Rabbi Ekstein noted that “the genetic
panel has expanded beyond Tay-Sachs to include other genetic
diseases that display similar inheritance patterns and are fatal or
severely disabling.”
“This is what happens when you have people with no scientific
orientation who want to do good,” says Rabbi Moshe Dovid Tendler, a
professor of medical ethics at Yeshiva University. “The question
arises, when do you stop? There are close to 90 genes you wouldn’t
want to have. Will this lead to people showing each other computer
print outs of their genetic conditions? We’ll never get married.”
Tendler is a trained microbiologist and
teacher of Talmudic law. In recent years, he has come to public view
for his outspoken defense of embryonic stem cell research and
research cloning, and he is a great friend of medical progress.
Tendler does not oppose genetic screening, but he has been an
unrelenting critic of Dor Yeshorim’s approach, particularly its
devotion to nondisclosure of each individual’s carrier status. “My
grandparents were born in America. The American ethical and moral
values are very important to me,” Tendler says. “The idea that Dor
Yeshorim has genetic information and refuses to share it with the
person who it belongs to is unfair, irrational, and almost
anti-American. If you submit blood, you should be able to have the
results.”
Dor Yeshorim only gives approval or disapproval of a match; it
does not inform individuals of their carrier status. “By keeping the
results a secret, the testing program avoids the cost of counseling
every carrier of a genetic disease,” Rabbi Ekstein argued in a
recent article. “You don’t need the counseling, we do the job for
you.” Of course, if a couple is told that they are not a suitable
match, they know by implication that each of them is a carrier of
one of the recessive genes. Thus while keeping the specifics of
people’s genetic status private, Dor Yeshorim’s approach does not
eliminate the potential for stigma. “When a match is proposed and
nothing happens,” says Rabbi Tendler, “people naturally ask, why
didn’t this happen? They submitted to Dor Yeshorim and then decided
not to get married. This reveals immediately to their entire Jewish
community that there are two people who are blemished.”
Rabbi Tendler’s concerns are borne out in recent research about
gene-carrier status and community stigma. “Our personal experience
as well as those working within the Orthodox Jewish communities is
that [stigma] is a real concern and that stigmatization of carriers
for purposes of marriage has occurred,” explains Brooklyn oncologist
Mark Levin in a recent study in Genetic Testing. “Anxiety
appears to be increased in identified carriers … Among high school
students, nearly half of carriers felt ‘worried or depressed.’”
The stigma is only worsened by the dramatic decline in the number
of Tay-Sachs cases. Thanks to the Tay-Sachs screening effort that
began in the late 1970s, “there has been a 90 percent reduction in
the incidence of Tay-Sachs disease in the Jewish populations of the
United States and Canada from 1970 to 1993,” according to a recent
study. “We’ve not destroyed the disease, we’ve just changed the
chance of having it,” says Karen Rothenberg of the University of
Maryland School of Law. As more “Jewish genes,” such as those for
breast and colon cancers, are discovered among Ashkenazi Jews, the
potential for discrimination is heightened. “Stigmas are tied to
stereotypes,” Rothenberg says. “In the Jewish population, mental
illness carries more stigma than cancers. But in the Orthodox Jewish
community, cancers related to reproduction, such as breast or
ovarian cancers, are stigmatized because they are linked to the
reproductive value of women in that community.”
At the individual level, one might argue that
discovering the genetic basis for a certain condition should
neutralize the stigma attached to it—“it’s not my fault, after all,
if it’s in my genes.” But when a specific group possesses a negative
genetic trait, stigma could attach to the entire ethnic population,
with almost certainly negative results.
Judaism and Eugenics
Stigmatization
of Jews based on their genes inevitably raises the specter of
eugenics. As Laurie Zoloth, Director of the Program in Jewish
Studies at San Francisco State University, has written: “If the
concept of prenuptial and prenatal screening is halakhically
acceptable for Tay-Sachs, and the technology exists to uncover more
and more diseases, then the process shifts perilously close to the
eugenic imperative.” “We are affirming eugenics, the idea that Jews
are the repository of bad genes,” adds Rabbi Tendler. “We only read
about Jewish genes, and I’ve been pleading with investigators to
publish alongside Jewish statistics some statistics for screening in
other populations such as Icelanders or the Amish. There should be
some sensitivity to the history of eugenics, especially at a time
when anti-Semitism is on the increase worldwide.”
Dor Yeshorim’s leaders are dismissive of such
criticism. “Because we are a premarital screening program and are
not involved in the manipulation of genes after the fact … we are
not practicing eugenics,” Rabbi Ekstein told U.S. News & World
Report in 1994. “We successfully addressed this issue ten years
ago and consider ourselves the pioneers in protecting the public,”
he said. “Instead of throwing rocks at us, we invite the
professional ethicists to come and learn from our experience.”
What can be gleaned from Dor Yeshorim’s
experience? It has been effective within its own community, whose
insularity, respect for privacy, and shared belief in the
impermissibility of abortion have made premarital screening an
accepted part of the marriage market. “The ultra-Orthodox Jewish
community will never allow a marriage to take place without being
screened,” Dr. Rosner says. “The first question asked is, “Have you
been tested?” Rosner does note that “if both are carriers, they can
choose to marry and to do preimplantation screening to implant
unaffected fertilized eggs into the mother’s womb to guarantee the
birth of an unaffected, healthy child, if implantation results in a
successful pregnancy.” But either way, genetic testing is now
intrinsic to the larger ritual of matchmaking in the ultra-Orthodox
community.
Dor Yeshorim’s system of screening seems
difficult to criticize when it comes to always-fatal diseases such
as Tay-Sachs. And the Orthodox approach to premarital screening
seems to embody a community belief in the obligation of this
generation to the next, rather than the eugenic imperative to
eliminate the unfit. Those with Tay-Sachs, after all, are cared for,
not discarded, by the Jewish community. Their lives are seen as
tragic, not worthless. But as the system of genetic screening
expands to non-fatal and late-onset genetic conditions, the ethical
boundaries become more amorphous. And Rabbi Ekstein’s cursory
dismissal of the eugenic implications of his organization’s work is
far from thoughtful. To suggest that because Dor Yeshorim is not
manipulating genes “after the fact” it is not practicing eugenics is
disingenuous at best. American eugenicists in the early twentieth
century did not have the ability to manipulate genes after the fact,
and they, too, used “prevention” as their watchword. Like Dor
Yeshorim, they saw the regulation of marriage as the best way to
improve the human race through “better breeding,” and they lobbied
state legislatures to pass laws requiring eugenic examinations and
the issuing of “marriage health certificates” for couples applying
for marriage licenses.
Jewish groups outside the ultra-Orthodox community are less
sanguine than Rabbi Ekstein about the eugenic implications of
genetic screening and testing. In 1998, representatives from
Hadassah and the Jewish Council for Public Affairs met with
scientists from the National Institutes of Health and the National
Human Genome Research Initiative to discuss the dangers of genetic
stigmatization. Hadassah requested that the National Human Genome
Research Institute develop working guidelines for research on Jewish
genetic diseases. “This feels uncomfortable to the Jewish
community,” a Hadassah spokesperson told Biotechnology Newswatch.
“We understand how important this life-saving research is. [But] the
genetic findings, which already have led to the targeting of Jewish
people as a market for commercial genetic tests, could create a
perception of them as unusually susceptible to disease.”
Jews are not more likely than other groups to harbor hereditary
diseases, but their willingness to participate in medical research
has made them a favorite community for study, even more so than
other homogenous populations such as the Amish or Icelanders.
Pharmaceutical companies now troll Israeli hospitals, drawing blood
samples from Ashkenazi Jews. One Jerusalem-based company, IDgene
Pharmaceuticals, has Princeton University biologist Lee Silver as an
ethical adviser, and the company’s CEO recently noted that he
“believes his company can help pave the way for big pharmaceutical
groups to develop drugs and treatments faster than expected” by
studying Ashkenazi Jews.
In April 2003, Alfigen, Inc., a large, private genetics
diagnostic laboratory based in Pasadena, California, announced a new
panel of genetic tests for nine autosomal Jewish diseases—including
Tay-Sachs, but also many non-fatal conditions. The “Jewish Genetic
Disease Panel” includes tests for Bloom syndrome, Canavan disease,
cystic fibrosis, familial dysautonomia, Fanconi anemia, glycogen
storage disease type 1A, mucolipidosis type IV, and Niemann-Pick
disease type A. “The Jewish community has long been in a position to
recognize the benefits of genetic testing,” says Dr. E. Robert
Wassman, Vice President of Clinical Services for Alfigen. “The
market for genetic testing in general is slowly maturing,” he said,
“and in the future it is going to expand.”
Of course, Ashkenazi Jews are not the only
community facing difficult questions about our new genetic
knowledge. But the Jewish experience, for a host of reasons, is
unique. Given the Jewish community’s tragic history of suffering
deliberate ethnic discrimination—and more specifically, of being
treated as a people genetically unfit to live—one would hope for
more thoughtful reflection by the leaders of groups such as Dor
Yeshorim. Rabbi Ekstein refused repeated requests for an interview,
and his public utterances about Dor Yeshorim’s work often leave one
wondering whether the ethical firewalls he has attempted to
construct around his organization—privacy of the genetic information
gathered, unwillingness to reveal the particulars of an individual’s
carrier status—provide less of a bulwark against misguided eugenic
impulses than he claims.
At the same time, Dor Yeshorim’s success
stems largely from the fact that it functions in a community guided
by a particular moral sense, a moral sense grounded in shared
religious teachings about the Jewish individual’s obligations to the
next generation. Screening has become part of the larger ritual of
matchmaking, but it is sustainable only because the community as a
whole shares certain values—deference to elders in choosing a
spouse, moral opposition to abortion—that are foreign to the larger
secular society that surrounds it. As a result, the Dor Yeshorim
model of using our new genetic knowledge does not translate easily
outside this particular community. “Attempts to generalize [Dor
Yeshorim’s approach] to the non-Orthodox communities,” as Mark Levin
aptly summarized, “have generally failed.”
Choosing Better Babies
If
the future of eugenics within the ultra-Orthodox community involves
the expansion of premarital genetic testing by groups such as Dor
Yeshorim, the future of eugenics for the rest of the American public
is happening in places such as the Reproductive Genetics Institute
in Chicago. The Institute is ground zero for new reproductive
genetic techniques, and recently made international headlines by
performing genetic tissue-matching for a British couple seeking to
save the life of their dying child by giving birth to another child
genetically selected to serve as a tissue donor for the first. The
U.K.’s Human Fertilization and Embryology Authority rejected the
couple’s petition, but the Reproductive Genetics Institute (RGI) was
more than happy to assist them.
RGI is best known for its facility in
performing “preimplantation genetic diagnosis,” or PGD. This
technique allows physicians to perform genetic tests on a single
cell (or small group of cells) removed from an early-stage human
embryo produced using IVF. By extracting very small amounts of DNA
from these embryonic cells, physicians can determine if an embryo is
“genetically compromised,” as well as other genetic characteristics
like sex. “Because of the genome project and because we’re learning
more about linkages, we’ll do PGD for more diseases. It will
continue to expand,” says Dr. Yury Verlinksy, a pioneer in PGD and
the director of the Reproductive Genetics Institute. “We’re testing
for chromosomal abnormalities, we’re testing for chromosomal
arrangement, we’re doing genetic matching for life saving of
siblings,” he said. “In principle, PGD can be performed for any
genetic condition for which there is sufficient sequence
information.”
First developed in 1989, PGD is not yet a
widely used procedure. Approximately 2,000 children have been born
using the technique, which is available in roughly fifty centers
worldwide, most of them in the United States. But physicians such as
Verlinsky have high hopes for the procedure. “In the future, every
single treatment will involve some chromosomal analysis,” Verlinksy
predicted. He helped organize the First and Second International
Conferences on Preimplantation Genetics and founded an International
Working Group that regularly reviews the safety and efficacy of PGD
procedures and whose website graphic is, appropriately, a large,
undulating powder-blue double-helix.
The “Scientific Summary” of the 12th annual
meeting of the International Working Group on Preimplantation
Genetics in 2002 exudes only excitement about the rapidly expanding
scope of PGD: “The important present feature of PGD is its expansion
to a variety of conditions which have never been considered as an
indication for prenatal diagnosis, including the late-onset
disorders with genetic predisposition and preimplantation
non-disease testing.” These late-onset disorders include certain
cancers, retinoblastoma, and Von Hippel-Lindau disease, but PGD
could also be used, as the report concedes, for “gender
determination for social reasons.” “It means if you have a mutation
that might make it more risky for breast cancer, colon cancer, or
for Alzheimer’s disease, we can use PGD,” Dr. Verlinsky explained.
Policymakers and ethicists are just beginning
to pay serious attention. A recent working paper by the President’s
Council on Bioethics noted that “as genomic knowledge increases and
more genes are identified that correlate with diseases, the
applications for PGD will likely increase greatly,” including for
medical conditions such as cancer, mental illness, or asthma, and
non-medical traits such as temperament or height. “While currently a
small practice,” the Council working paper declares, “PGD is a
momentous development. It represents the first fusion of genomics
and assisted reproduction—effectively opening the door to the
genetic shaping of offspring.”
In one sense, of course, PGD poses no new
eugenic dangers. Genetic screening using amniocentesis has allowed
parents to test the fitness of potential offspring for years. But
PGD is poised to increase this power significantly: It will allow
parents to choose the child they want, not simply reject the one
they do not want. It will change the overriding purpose of IVF,
which began as a treatment for infertility but now aims, as one
prominent fertility expert has said, “to help prospective parents
realize their own dreams of having a disease-free legacy.” Over
time, PGD will be used not simply to spare the birth of “doomed
children,” who would be born with diseases that kill in the first
few years of life, but to avoid the birth of children with a higher
chance of getting certain illnesses later in life. And it will do
so, as one ethicist described, “only by picking and choosing embryos
like consumer goods—producing many, discarding most, and desiring
only the chosen few.”
If we are moving too quickly into the realm
of eugenics, and doing so with the blessing and encouragement of the
medical profession, it is due in some measure to new liability
fears. The power to select brings with it the danger of failing to
act on that power. In 1998, a couple in New York sued a fertility
clinic for medical malpractice after their child was born with
cystic fibrosis. The egg donor used by the clinic had been screened
for cystic fibrosis and found to be a carrier, but clinic staff did
not inform the couple of this fact or urge the husband, whose sperm
was combined through IVF to conceive the child, to be tested for
carrier status himself. Citing a “breach of the standard of care,”
the father claimed he “emotionally suffers and will continue to
emotionally suffer as a parent of a child affected with [cystic
fibrosis] which is a chronic, debilitating and painful disease for
the rest of her life.” On summary judgment, the Court ruled that the
parents were entitled to damages to cover the cost of their child’s
care, but not damages for her “wrongful birth.” The ruling in the
case is nevertheless chilling to read. “It is difficult to conceive
that parents, concerned about whether the egg donor had freckles and
with the size of her eyes and ears, would not have expected full
disclosure of information regarding whether she carried cystic
fibrosis,” the judge noted. Such “wrongful life” and “wrongful
birth” suits are only likely to increase.
Most experts agree that genetic screening of
offspring before birth will eventually become a regular part of most
pregnancies. As bioethicist John Robertson has argued, “the
perceived dangers of ‘quality control’ appear to be insufficient to
remove these choices from the discretion of people planning to
reproduce.” What matters, in other words, is protecting and
expanding procreative liberty. But the more lasting significance of
our new genetic powers may not be the freedom to reproduce in new
ways, but the obligation to reproduce only in the most advanced,
most effective, and safest ways possible. For certain patients,
particularly older women, screening and testing have already become
the standard of care. “It’s now a duty, not a choice,” says Karen
Rothenberg. Those who oppose discarding unfit embryos or aborting
unfit fetuses will soon become—perhaps already are—a dissident
culture, tolerated at best, but more likely heavily regulated by a
society that increasingly expects only healthy children to be born.
The Future of Eugenics
So
far, we have not wanted to view premarital genetic diagnosis and PGD
as eugenics, because their main effect has been to reduce the number
of children born with serious or fatal genetic conditions such as
Tay-Sachs. But perhaps we should face the fact of a re-emerging
eugenics. Indeed, our most prominent bioethicists have begun
rehabilitating the eugenic idea from the dustbin of history. As
Arthur Caplan, Glenn McGee, and David Magnus argued in 1999 in the
British Journal of Medicine: “An individual couple may wish
to have a baby who has no risk of inheriting Tay-Sachs disease or
transmitting sickle cell disease. Or they may want a child with a
particular hair color or of a particular sex … No moral principle
seems to provide sufficient reason to condemn individual eugenic
goals.”
Government regulation in the field of
“reprogenetics,” as it is now called, is virtually nonexistent. “I’m
a hematologist/internist,” Dr Rosner told me, “and I could hang up a
sign that says ‘IVF Clinic’ and go to work.” Last year, the
President’s Council on Bioethics began a major inquiry into the
state of public policy in areas of biotechnology that touch the
beginnings of human life, noting that “there is presently no
governmental body (state or federal) exercising monitoring or
regulatory authority over the use of PGD,” nor is there regulation
or oversight of the long-term health effects of PGD on children born
using the procedure. Worse, the Council observed, “there are also no
governmental or nongovernmental guidelines regarding the boundary
between using PGD for producing a disease-free child and using it
for so-called enhancement purposes or to produce siblings for
children needing transplant donors.”
Fertility doctors, not surprisingly, believe
more oversight is unnecessary. “PGD is just an extension of prenatal
diagnosis, and that is self-regulated,” says Dr. Verlinsky. But so
far, the self-regulation of reprogenetics has proven a failure. The
American Society for Reproductive Medicine (ASRM) has issued a
handful of ethical guidelines, such as discouraging the use of PGD
for sex selection. But these guidelines are not enforced, and
prominent members of the leading professional society (the Society
for Assisted Reproductive Technology) have begun aggressively
advertising this service to consumers. A recent study about genetic
testing in the Hastings Center Report concluded that “for the
immediate future regulatory constraints will be the only moral
influence that can be brought to bear by the relevant scientific and
medical associations.”
But the prospect of developing such a system
of oversight requires much greater clarity—or at least public
debate—about the goods or values that such a regulatory system would
aim to defend. Put simply: Why regulate at all, and why worry about
the uses of new reprogenetic technologies? This is, as we are
discovering, not an easy question to answer. The benefits of
premarital screening and PGD are perhaps obvious: the birth of
healthy children. But the costs, if less obvious, are no less real:
the return, in a new humanitarian guise and armed with the latest
assisted reproduction techniques, of the eugenic idea. “We used to
teach our children that when a baby is born, you count its fingers
and toes, and if they are all there, thank God, and don’t ask any
more questions,” Rabbi Tendler told me. “The blessings of normalcy
are poorly appreciated these days.” Such blessings have become an
expectation.
In The Gift, playwright Nicola Baldwin
traces the generational confrontation between a father and his
son—but with a modern genetic twist. The son was the product of PGD,
screened to avoid a debilitating genetic disease that had afflicted
the boy’s aunt. For good measure, however, the father also selected
a gene that would make his son a superior athlete. When the son
finds out he has been engineered, it calls into question his own
sense of self. The belief that his athletic ability was something he
had earned—or something that was his own, a natural gift—is replaced
by a persistent dread that he is little more than a manufactured
being. Rabbi Immanuel Jakobovits, a pioneer in Jewish medical
ethics, put the matter more directly as long ago as 1975: What do we
lose when we begin “replacing the matchless destiny of the human
personality by test-tubes, syringes and the soulless artificiality
of computerized numbers”?
Although our genetic age is still in its youth,
we have already compiled a fair number of conceits. Of these, the
notion that we are free of the eugenic urges of the past is the most
worrisome. The question is no longer whether we will practice
eugenics. We already do. The question is: Which forms of eugenics
will we tolerate and how much will we allow the practice of eugenics
to expand? Sorting this out will require greater moral seriousness
from reprogenetics practitioners, greater foresight and courage from
policymakers, and greater realism from those who wish these new
genetic powers never existed in the first place. Not all eugenic
practices are equal, and often the same practices can have very
different meanings when pursued in a different spirit or governed by
a different moral purpose. Perhaps some forms of eugenics are sacred
and some profane. But we ought never allow good intentions (or
claims of holiness) to blind us to moral realities—especially the
ways a new privatized eugenics, directed by individuals or specific
communities, will affect the range of human possibilities for
everyone.
Christine Rosen is a senior
editor of The New Atlantis and resident fellow at the Ethics
and Public Policy Center.
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