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A magazine of forecasts, trends, and ideas about the future
January-February 2008 Vol. 42, No. 1
Genetic Ethics and "Superbabies"
Drawing
the line between preventing ailments and bestowing genetic advantage.
Genomic research has been on a
sprint since 2003, when researchers with the International Human Genome
Project completed their map the nucleotides that form human DNA. Some
researchers believe that in the next few years, science will be able to
recognize and possibly eliminate a most of the world’s congenital diseases
(through a process called preimplantation genetic diagnosis, or PGD) and
better treat many other diseases at the cellular level.
Genomics may also enable
otherwise healthy individuals to change their own DNA to improve athletic
prowess or brain power, or allow the wealthy to artificially conceive
genetically "superior" offspring. As new gene treatment options spring into
existence, many people are seeking the line between legitimate gene therapy
and superhuman enhancement.
“The conceptual problem arises
the moment we consider that some of our most valuable medical interventions
are enhancements,” writes bioethicist Ronald M. Green in Babies by
Design: The Ethics of Genetic Choice. “Vaccines are a leading example.
Almost no one is naturally immune to smallpox, polio, measles, whooping
cough, or any of the other diseases that we vaccinate against.
"When we are inoculated, the DNA
in our white blood cells undergoes irreversible genetic changes, initiating
the synthesis of antibodies to many viruses and bacteria. Vaccinations make
us superhumans, but no one ridicules enhancements of this sort. In most
places in the United States and other industrialized countries, a child
cannot enter school unless he or she is vaccinated,” Green points out.
There are several types of
genetic enhancement, each with its own ethical, and practical, strengths and
weaknesses.
Somatic gene modification
involves treating or changing the adult genes in a patient. A hypothetical
example of somatic enhancement would be gene doping, in which an athlete
takes a substance to “trick” his DNA into producing more testosterone on a
regular basis.
Alternatively, germline gene
modification is done before birth, usually during the embryo stage. A
Germline therapy for immunodeficiency could involve removing the sickle cell
anemia gene from a developing embryo. One example of germline enhancement
would be imbuing a developing embryo with certain characteristics seen as
desirable, thus "designing a baby."
Somatic therapy is the less
controversial of the two. Many researchers believe it holds the most
promise, though meaningful breakthroughs in somatic therapy are still
several years away.
Germline therapy may be more
practically achievable. According to the Johns Hopkins Genetics and Public
Policy Center, PGD has been used to screen for 1,000 genetic disorders. The
therapy is also more provocative.
“I have been in the gene therapy
field since 1987,” says Dr. Markus Grompe, a fellow at the conservative
Westchester Institute for Ethics and the Human Person. “It was very clear
from day one that [genomics] could be used to change our species genetically
by manipulating the germ line, i.e. making transgenic humans. There has been
a consensus from day one that this would be off limits, ethically." Leon
Kass, head of the President's Council on Bioethics has likewise argued
against tampering with the human genome.
Inoculating children in the womb
against serious diseases or disorders is not, on its face, controversial.
But is manipulating cells to guard against traits that are merely
undesirable ethical or unethical? Who gets to draw the boundary? As Green
points out in his book, physical unattractiveness, or even plainness, can
have real consequences over the course of human lifetime in terms of lost
status and earning power. Is homeliness a disorder that should be treated
genetically? What about being of a certain sex? The Mastertons, a British
family, made headlines in the United Kingdom when they appealed to the
government's Human Fertilisation and Embryology Authority for the right to
determine the sex of their offspring by screening the fertilized eggs to be
implanted. The Authority denied the request. Couples in the United States
can use PGD to screen their baby's sex without restriction.
Babies by Design suggests
four basic principles for distinguishing between gene manipulation that is
ethical and that which is somewhat less than scrupulous.
1.
Genetic interventions should
always be aimed at what is reasonably in the child’s best interests.
“A child’s likely consent is a rough-and-ready first test," writes Green,
"but it should always be measured against the broader standard of what the
larger community regards as being reasonably in the child’s best interests."
2.
Genetic interventions should be
almost as safe as natural reproduction.
According to Green, parents' wishes are an important part of the moral
equation in determining what is ethical and what isn't. These wishes, he
says, "have weight and should be respected so long as the child is not
likely to be seriously harmed. . . . Where enhancement is concerned, we
should factor into our thinking the prospect of added benefit for the child.
If rational adults can invite some risks in undergoing cosmetic plastic
surgery or a laser eye procedure, parents can also accept some added risk
for their future child to give these benefits.”
3.
We should avoid and discourage
interventions that confer only “positional” advantage.
“Some requests for gene enhancements, like sports doping, could produce a
tragedy of the commons," argues Green. "Parents seeking a sports champion
might try to have a child with an elevated red blood cell function. At its
extreme, this request could significantly increase the child’s risk of heart
disease. Once many other parents started doing the same thing, the result
would be no competitive advantage for anyone—bought at the price of
increased health risks for all."
4.
Genetic interventions should
not reinforce or increase unjust inequality and discrimination, economic
inequality, or racism. “Gene
enhancements could widen the gap between the haves and the have-nots,” Green
points out. “We should think of effective ways or either controlling or
increasing access to them.”
Regardless of whatever
guidelines governments enact, individuals frightened by the potential of
gene science—or offended by the mere notion of it—will surely persist in the
belief that the human genome is too precious to be tampered with. Yet,
millions of others will likely turn to genetic science to help safeguard
their children against disease, confer desired traits, or even imbue their
offspring with physical or mental advantages. Just as the science of genetic
manipulation is only in its infancy today, so the debate about what
constitutes ethical genetic enhancement has barely begun. —Patrick Tucker
Source: Babies by Design:
The Ethics of Genetic Choice by Ronald M. Green. Yale University Press.
2007. 270 pages. $26
