Special
Section - Human Destiny Designer babies, anyone?
By PAMELA SCHAEFFER
As anyone who keeps up with breaking
news already knows, recent experiments in genetic manipulation have enhanced
intelligence of mice, enabling them to more easily navigate mazes and remember
what they learned.
Alert householders have not missed the implications. If such
engineered mice escape and reproduce, it has been duly noted, the nuisance
factor in homes will zoom.
Not to worry. Scientists have also found a way to change the
mouse’s personality. That aloof little creature noted for its sneak
attacks can be transformed into a more agreeable and sociable kitchen visitor
simply by injecting it with the genes of cuddly prairie voles.
If only, some readers are surely thinking, someone could do that
with our co-workers and kids.
And that’s where the future comes in.
Fast forward to the year 2050 when, Princeton University biologist
Lee M. Silver predicts, a partnership between biotechnology and computers,
known as “bioinformatics,” may allow parents to assess genetic
profiles of hundreds of embryos containing their genes and decide which one
will become their child. Profiling will allow them not only to rule out
predisposition to serious diseases, but also to select physical
characteristics, special abilities and personal attributes.
Possibly further down the road but almost sure to come, experts
will be able to actually alter genes to produce designer children in conformity
to specific parental desires.
More and more in the late 20th century, such scenarios, once the
province of futuristic fiction, are looking not just possible, but likely.
Ethicists, opponents of abortion, and even some scientists are beginning to
sound alarms about the medical, social and moral consequences as scientists
work feverishly toward genetic treatments for disease, with the prospect of
genetic “enhancements” not far behind.
Jeremy Rifkin, author of The Biotech Century and one of the
most vocal critics of biotechnology, warns that a huge life sciences industry
“is already beginning to wield unprecedented power over the vast
biological resources of the planet.” In the next century, he predicts,
eugenics -- once the province of elitists and political demagogues -- will be
repackaged and promoted as “consumer options.”
Lee M. Silver, a biologist and author who lectures widely on the
social impact of biotechnology, predicts that production of children to conform
to genetic profiles could be an available technology by the middle of the next
century.
Alongside some “truly wonderful medical advances,”
genetic therapies for some of the 20th century’s most insidious and
intractable diseases, we may end up “cell by cell … surrendering our
humanity to the marketplace, bartering ourselves away one gene at a time in
pursuit of our own engineered perfection.”
Genes are big business
Genes are, quite simply, big business. “Clearly, much more
money is riding on the new genetics than was the case with traditional
biomedical research,” wrote Thomas A. Shannon, Catholic theologian, in his
new book Made in Whose Image. Shannon teaches at Worcester Polytechnic
Institute in Worcester, Mass.
Further, much of it is private money, driving research that is
unfettered by public controls.
Lisa Sowle Cahill, a theologian at Boston College, points out that
news about biotechnology often breaks in the business pages, a reflection of
the way the public views the research. The direct effects on human lives
“seem distant to a lot of people,” she said. “They don’t
see how they can be harmed. Their main concern is should we invest in this?
They don’t see the other side of it.”
Just as in vitro fertilization -- developed as a treatment for
infertility -- paved the way for genetic manipulation, the first efforts in
genetic manipulation are likely to be aimed at healing rather than at producing
designer kids. Scientists working on the Human Genome Project expect to
complete the mapping of some 100,000 human genes (or possibly 140,000 according
to a news report released late in September) on 23 pairs of human chromosomes
by early in the next century, revealing the root causes of many diseases.
Isolating some 2,000 to 5,000 genes currently thought to either cause or
predispose human beings to disease is, scientists say, the first step in the
hard work of finding genetic cures. As an example of current time lags between
discoveries and medical applications, no cure is yet available for cystic
fibrosis, though biologist Francis Collins discovered its sources in a genetic
flaw nearly 10 years ago.
Distinctions basic to any discussion of what lies ahead are those
between somatic genetic therapies, germ line genetic interventions and stem
cell research.
Somatic gene therapy (from soma, for body), the least
controversial of the three procedures, though still in experimental stages,
involves inserting normal genes or DNA fragments into body cells in an effort
to correct a genetic defect that is producing disease or may become disease
producing. The therapy, limited to a given individual, enjoys wide public
support -- as much as 83 percent according to one recent poll.
Germ line interventions, whether for therapy or enhancement (such
as to heighten intelligence, or make a person taller) are directed at the germ,
or reproductive cells. Germ line alterations are far more controversial than
somatic therapies because of their inevitable and possibly unpredictable
effects on future generations who are unable to give their consent. Some
scientists think the process, which alters the fertilized egg, may never be
free enough of risk to ever be wisely used. As the egg divides, genetic
modifications become permanently encoded in the cells, including the
reproductive cells, of the new organism.
Among somatic gene therapies under development, researchers
announced in late August that they had achieved permanent correction of a
diseased gene for the first time, leading toward cure of Crygler Najjar
syndrome. The disease afflicts children, particularly Amish children, with
fatal brain damage. Success with that procedure has implications for curing
other disorders from inhered single-gene defects, such as hemophilia and sickle
cell anemia. Then, in September, scientists performed an experimental genetic
therapy on a 36-year-old man with muscular dystrophy, a progressive, often
fatal, muscle-wasting disease. Researchers injected genes into the man’s
foot hoping they would supply a muscle protein that’s missing because of a
genetic flaw.
Genetic cures for diseases associated with multiple genes, such as
various forms of cancer, are more complex, but researchers are working on
stopgaps: drugs that block disease-producing messages generated by defective
genes, and animals with human genes as a source of organs for transplant into
humans.
In July, three medical institutions in Houston announced that they
were creating a $30 million cell-and-gene therapy and research center aimed at
revolutionizing therapy for illnesses ranging from cancer and AIDS to
cardiovascular disease and diabetes, and eventually diseases that affect the
central nervous system, such as Parkinson’s and multiple sclerosis.
Leaders at the center said that they expected few giant
breakthroughs but rather steady progress that would justify the hype
surrounding genetic research.
Undoubtedly, though, more setbacks will be part of the picture,
too, like the death in September of an 18-year-old man following a gene therapy
trial at the University of Pennsylvania.
Few doubt that genetic cures will come. But knowledge about
genetic predispositions and its attendant complications and dangers will come
first. There’s a downside to such information that has many ethicists
worried. It will alert insurance companies and employers to people who, though
they appear healthy, are likely to develop into bad risks. Until cures are
found and made affordable, a child who might have been celebrated as robust and
healthy had she been born at the turn of the 21st century might be lamented as
a potential victim of a still-incurable disease if born 20 years later. New
standards of health will apply.
Meanwhile, informed genetic counselors will be badly needed. Yet,
ethicists say, churches are ill prepared to provide them.
In a future in which genetic treatments become available at the
earliest stages of human development -- or in which problematic embryos are
destroyed or donated for research -- will people who do become sick, or even
disease-prone people, become victims of discrimination, even more so than they
are today, by insurance companies, employers and peers? Disease in such a
future would no longer be a problem that cuts across economic lines. Rather,
like quality of schools and housing, its presence or absence would be, far more
than at present, another criterion that defines economic groups.
As a forerunner of the ambiguity that lies ahead, critics point to
the relatively widespread use of a growth hormone. Initially developed as a
treatment for dwarfism, a rare condition that afflicts some 7,000 children,
critics contend that pharmaceutical companies have created a lucrative market
by successfully promoting the drug as a muscle builder and, even more
problematically, as a way of adding a couple of inches of height to children
whose growth falls within the normal range.
Companies deny that they have inappropriately marketed the drug.
Yet, it has been prescribed for some 20,000 children, putting it among the
nation’s 50 best-selling drugs. In America, where height is statistically
related to success, some ethicists worry that otherwise normal degrees of
shortness are subtly being redefined as disease.
The advent of genetically engineered characteristics and talents
is almost sure to raise the ante on what parents might reasonably be expected
to provide. Music lessons and private schools represent one level of
“enhancement”; genetic engineering, proceeding from a socially
determined life script, is quite another. Will children be allowed to sue their
parents if they don’t like the enhancements their parents chose or if
their parents failed to provide enhancements at all?
What lies ahead, ethicists fear, is an increasingly fuzzy line
between therapy and enhancement, and a search for medical solutions to social
problems. Rifkin predicts that genetics will become “the ultimate consumer
playground.” (This process is already evident to some degree with a
booming market in cosmetic surgery in the United States as women and men alike
pay thousands to rework faces and bodies to some elusive standard of youth and
perfection.)
“The easier it is to change our bodies to relieve our
suffering, the less inclined we may be to try to change the complex social
conditions that produce that suffering,” Eric Parens wrote in Enhancing
Human Traits, a collection of essays developed from a two-year project in
the social implications of biotechnology at the Hastings Center, a medical
ethics research center in Garrison, N.Y. “Wouldn’t it be easier, for
instance, to engineer genes to eliminate dark-skinned people than to address
the historic patterns of racial discrimination in the United States?” one
of the writers wondered. Parens, who edited the book, is associate for
philosophical studies at the Hastings Center.
No wonder the race to patent human genes -- another ethical
quagmire -- is well underway. In a 1980 ruling that scientists hailed, the U.S.
Supreme Court sanctioned patenting genes, widening the road to
commercialization. Splitting five to four on the decision, justices said that,
under U.S. patent laws, living things are essentially no different from
inanimate objects. Rather, the court said, the critical test in awarding
patents is whether human invention is involved.
Call for ban on patented genes
In 1995, Rifkin and a coalition of 180 religious leaders from 80
denominations called for a ban on patenting human or animal genes, saying that
the process devalues the sanctity of life. “The question of whether life
itself is to be regarded as a human invention of God’s creation is one of
the seminal issues of the coming age,” Rifkin said in calling for the ban.
Biotechnology and drug industries argue that such patents are essential to
research leading to genetic therapies for disease.
Thomas Shannon, underscoring religious leaders’ need for
better scientific information, pointed out that Rifkin’s statement in its
entirety was misinformed and misleading, an unfortunate chapter in a
much-needed ethical and religious debate. Such missteps undermine the
credibility of religious leaders and risk their place at the table in debates
to come, Shannon wrote in Made in Whose Image.
Despite potential problems and abuses, Pope John Paul II has
expressed openness to genetic engineering, giving what Catholic theologian
James J. Walter of Loyola Marymount University describes as a “yellow
light” to research. “He has said that there is nothing in principle
wrong with germ line engineering, even with enhancing the human being,” he
said.
Specifically, the pope said this in a 1983 address at the Vatican
to a convention of the World Medical Association: Genetic manipulation aimed at
healing disease is consonant with the Catholic moral tradition and “will
be considered in principle as desirable provided that it tends to real
promotion of the personal well-being of man, without harming his integrity or
worsening his life conditions.” The pope also left the door open to
genetic enhancements, urging “moral discernment” and adding some
caveats. Among them, the pope said genetic manipulations “must not offer
harm to the origin of human life,” and should not “modify the genetic
store to create groups of different people, at the risk of provoking fresh
marginalizations in society.”
Of course, the Catholic church strongly opposes any research
destructive to human embryos and any production of embryos to be used for
research. However, procedures intended to be therapeutic can be performed on
embryos, including genetic screening and treatments. Further, the Vatican said
in its 1987 document Donum Vitae (“Instruction on Respect for
Human Life”), procedures and drugs not fully tested can be licit when
performed or used on a human embryo “in the absence of other reliable
forms of therapy” and “in a final attempt to save its life.”
For the public at large, as well as for theologians and ethicists,
the issues are profound. Ronald Cole-Turner, professor of theology and ethics
at Pittsburgh Theological Seminary, worries that the debate is too narrow.
“To me, at least, it is distressing,” he wrote in Enhancing Human
Traits, “that precisely at the moment in human history when we are
poised on the threshold of the possibility of the technological manipulation of
human nature, we have very little consensus on what we mean by human
nature.”
It is here, Shannon believes, that Catholic tradition can play a
positive role.
“There is,” he wrote, “an overarching wisdom in the
Catholic tradition that argues for the dignity of the person, a suspicion about
power and control, and a recognition that physical interventions, whether
medical or social, touch a person and not only that person’s body. That
wisdom stands independently of any of the specific claims and arguments of the
magisterium or of the theologians. Such wisdom needs a hearing.”
National Catholic Reporter, October 22,
1999
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