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LONDON,
NOV. 11, 2000 (ZENIT.org).- Recent announcements about developments
in the field of genetics
are raising new hopes -- and warnings.
On the positive side, early detection of a propensity toward
some diseases
could enable preventative
action. As well, treatment involving genetic
therapy could alleviate
serious illnesses. On the negative side, some fear
discrimination because of
their genetic makeup, while the prospect of
tampering with man's
genetic heritage also raises justified concern.
Genetic studies
An example of the benefits
of genetic research was published Oct. 30 by The
Guardian newspaper in
England. Ten remote villages in southern Italy have
been selected for a study
where scientists can harvest the racially pure
inhabitants' DNA to
identify the causes of disease.
This area has been isolated for centuries by mountains and
forest, and the
villagers' genetic history
stretches back to the Greeks and could hold the
key to cures for
Alzheimer's disease, asthma, cancer and hypertension. The
inhabitants agreed to
become a living laboratory after it was explained
they possessed a unique
gene pool that could help create better drugs.
Scientists chose Cilento, two hours south of Naples, because
it has been
undisturbed by large-scale
immigration for millennia. Some of the villages,
which each have between
600 and 2,000 inhabitants, still speak ancient
Greek and Albanian.
Another 70 Cilento villages are expected to join the
project next year. By
comparing genetically similar people it is much
easier to spot rogue genes
linked to disease, says Graziella Persico, who
is heading the team.
Similar scrutinies are taking place on the Italian island of
Sardinia,
where a gene data bank of
4,000 people from the villages of Perdasdefogu
and Talana is being
compiled, and in Iceland, which agonized over ethical
and privacy concerns
before handing over the entire population's medical
records to the American
company DeCode Genetics.
Gene testing and
discrimination
It's not only isolated
villagers who will have their genes examined.
Already health insurance
companies in some cases require information on
possible genetic defects,
and fears are mounting that this will lead to
discrimination, or higher
premiums, for those with deficiencies. The
situation was explained
the Oct. 24 issue of Wired Magazine.
Although federal and state laws in America prohibit group
insurers from
discriminating against
patients based on any test, including genetic tests,
a study published in the
American Journal of Human Genetics found that the
worry of genetic
discrimination is very real.
According to Wired, out of 34 genetic counselors and patient
advocate
groups questioned, the
great majority said they believe that discrimination
by health insurers is
widespread and common. Mark Hall, a professor of law
and public health at Wake
Forest University, headed the study.
The National Institutes of Health agrees that this fear is
not unfounded.
"Too many Americans
fear that their genetic information will be used to
discriminate against them
and too often they are right," reads an NIH
report on the topic.
Meanwhile, in England, The Independent reported Oct. 11 that
genetic
testing by insurance
companies is to be sanctioned. The government's
advisory body on insurance
and genetics decided to approve the use of DNA
samples to assess whether
a person will inherit the degenerative
Huntington's disease.
The newspaper judged that this approval would begin a string
of
applications by the
insurance industry to use genetic tests for inherited
diseases, including breast
cancer. The fear is that in the future, people
who have had a DNA test
for diseases, and who refuse to disclose it to an
insurance company, could
render their coverage null and void.
Most countries are likely to follow Britain's lead, and allow
insurers to
take account of genetic
tests, according to the Oct. 21-27 edition of The
Economist. "If the
information is out there, it will eventually be used,"
says David Schiff at
Schiff's Insurance, a trade publication. But
compulsory disclosure of
test results will also cause enormous changes in
the insurance industry.
Insurance is based on the notion that it makes sense to pool
risk.
Companies rely on the fact
that, on average, the payouts to the
unexpectedly unhealthy
policyholders will be offset by unnecessary premiums
paid by the healthy. In an
uncertain world, individuals are happy to go
along with this and pool
their risk with others.
Genetic testing, however, promises substantially to reduce
the degree of
uncertainty. The
genetically best-off will choose not to pool their risk
with others, the worst-off
will find that they have become uninsurable, and
the insurance market will
shrink.
This, suggests The Economist, may lead governments to provide
a safety net
of some kind for those at
high risk. Indeed, genetic testing may become the
most potent argument for
state-financed universal health care.
Genetic engineering
In the area of
reproduction the possible changes due to developments in
genetic technology promise
to be still more radical. The British paper
Daily Express on Oct. 25
quoted an American scientist, Greg Stock of the
University of California,
as saying that the "messy business" of
procreation will, in the
richest parts of the world, be consigned to
history as humans take
control of their evolution and turn instead to the
creation of "designer
babies."
Addressing the world's largest ever gathering of fertility
experts, in San
Diego, professor Stock
predicted that a number of new technologies would
mean that parents wishing
to have children will turn to science rather than
letting nature take its
course. He said that several technologies --
including conventional in
vitro fertilization treatment, pre-implantation
genetic screening, and a
forthcoming technique which will allow women to
produce thousands of eggs
to store for later use -- would revolutionize
reproduction.
Genetic screening to reduce the chances of having a baby with
diseases such
as cystic fibrosis, for
example, will be widened in scope as more genes are
identified.
"We will, in essence, be able to take a single cell from
an embryo in the
lab and calculate from
that how the child will develop," Stock explained.
"Effectively, the
child will have to pass a test before it is even born.
Eventually it will be
thought as reckless to have a child without genetic
screening as to have a
child without prenatal screening, as happens today."
Most controversially, Stock advocated a technique called
"germ-line
manipulation."
Conventional genetic therapies involve altering the genes in
the body of an individual.
Germ-line engineering means altering the genes
in the individual's sex
cells as well, meaning the new genes are passed on
to future generations.
Fortunately other scientists are not in favor of tampering
with our genetic
heritage. The American
Association for the Advancement of Science warned
against attempting to
change genes and trying to create future generations
of perfect human beings,
the Associated Press reported Sept. 19. According
to Dr. Theodore Friedmann
of the University of California, San Diego, the
method of
"inheritable genetic modification,'' or IGM, "is not safe
for
humans."
He said experiments have produced animals born with major
birth defects,
gross physical distortions
and fatal abnormalities. The same thing, he
said, could happen in
humans if the current IGM technology were applied.
Scientists are also working on ways to avoid passing on
genetic changes to
future generations. An
Oct. 29 report in The Age newspaper of Australia
says a mechanism has been
developed whereby a gene engineered into a germ
line can be "turned
off" so it is not transmitted to offspring.
The CRE/lox system, as it is known, was developed by
researcher Mario
Capecchi at the University
of Utah, who has successfully demonstrated it in
mice. Along with the genes
he wishes to insert, Capecchi also incorporates
into his mice additional
DNA-based control sequences that, when triggered,
act to delete the added
genes from the germ cells.
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