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8-Humans: The real face of cloning



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TITLE:  The real face of cloning
SOURCE: USA Today, by Tim Friend
        http://www.usatoday.com/news/2003-01-16-cloning-usat-cover_x.htm
DATE:   Jan 16, 2003

------------------ archive: http://www.gene.ch/genet.html ------------------


The real face of cloning

The Raelians, a religious group that believes space aliens created life
on Earth, grabbed headlines with their day-after-Christmas claim that
they had helped bring the first human clone into the world. That claim
remains unproven, and most experts consider it a hoax. This cloned calf,
that later died, was born with deformed lungs and was unable to breathe
without the aid of a respirator. Advanced Cell Technology

But as the dust settles from the carnival atmosphere of the past few
weeks, other claims that clones are coming remain. The day of the clone
may still be at hand.

"It is absolutely inevitable that groups are going to try to clone a
human being. But they are going to create a lot of dead and dying babies
along the way," says bioethicist Thomas Murray, president of the Hastings
Center, a bioethics think tank in Garrison, N.Y.

Lost in the hype surrounding claims of human cloning are hard scientific
facts that show cloning animals is fraught with perils both before and
after birth. Scientists are able to clone sheep, cattle, pigs, goats and
mice, but not without significant errors that commonly result in
oversized fetuses, placental defects, lung, kidney and cardiovascular
problems, brain abnormalities, immune dysfunction and severe postnatal
weight gain.

Efforts to clone primates have proven even more difficult and might be
impossible with current methods, scientists say. Of particular concern
are embryos that appear healthy but at the genetic level are a "gallery
of horrors," says Tanja Dominko, who conducted primate cloning research
at the Oregon Regional Primate Research Center in Beaverton.

Advanced Cell Technology of Worcester, Mass., is the only scientific
group that has acknowledged making cloned human embryos for research
purposes. ACT medical director Robert Lanza says he hopes one day to
create cures for diseases such as Alzheimer's based on cells harvested
from cloned embryos. But so far, his team has found that cloning human
embryos is no simple task. Only one has reached the six-cell stage, and
it had significant genetic abnormalities.

Lanza says techniques are improving for purposes of medical research but
not enough for reliably creating healthy babies.

'Devastating birth defects'

If cloned babies start showing up in hospital nurseries, scientists
predict that they will be hooked up to respirators because their hearts
and lungs will have been deformed. Feeding tubes also might be necessary
for infants who have brain damage and cannot suckle. Others may have
extensive physical abnormalities. Even those born with a normal
appearance probably would experience epilepsy, autism or behavioral
abnormalities.

"All of the data on animal cloning demonstrates exceptionally high rates
of fetal loss, abortion (and) neonatal deaths, and many cloned animals
have devastating birth defects," says Gerald Schatten, vice chairman of
obstetrics, gynecology and reproductive science at the University of
Pittsburgh School of Medicine.

"When people are working with farm animals or laboratory mice and there
is a newborn that is suffering, veterinarians can euthanize the animal.
Are people who are attempting to clone humans going to euthanize
suffering children?"

Two fertility specialists, Severino Antinori of Rome and Panos Zavos of
Lexington, Ky., have announced independent efforts to clone humans.
Antinori announced in March that a clone would be born around January.
Zavos was to have begun his cloning efforts last fall. Antinori, Zavos
and Brigitte Boisselier of Clonaid, the Raelian company that claims to
have brought two cloned babies into the world, have made dozens of
television appearances, and to the chagrin of some critics, have acquired
an air of legitimacy by being invited to testify before Congress and the
National Academy of Sciences.

Yet none of these people has provided any evidence of the ability to
actually clone a human safely, Murray says. And when asked how they plan
to avoid the types of deformities found in cloned animals, all three
repeatedly have stated that the scientists who clone animals don't know
what they are doing.

"If you are doing it the way of the animal cloners, yes, there is a
risk," Zavos told USA TODAY in August when he introduced an anonymous
couple who said they plan to have a cloned baby. "We have the science of
maternal fetal medicine, and we will be monitoring the pregnancies very
carefully."

Many of the birth defects observed in cloned animals are similar to the
gross physical deformities and mental retardation found in rare genetic
disorders caused by a phenomenon known as genetic imprinting, says Arthur
Beaudet, professor of genetics at Baylor College of Medicine in Houston.

These disorders arise when the genes of the mother and father do not
align for embryonic development as nature intended.

Here's how imprinting occurs: At the moment of natural conception, the
30,000 genes in the DNA of the father must combine in the fertilized egg
with the 30,000 genes of the mother. Then there are two copies of every
gene, and together they form a master program to build an embryo cell by
cell, sometimes with genes from the father turned off to let the mother's
genes do the work, and other times the mother's genes stay silent to let
the father's do their part.

Imprinting disorders arise when either the mother's or father's genes
imprint themselves on the program in places where they should have been
minding their own business - like mom and dad talking at the same time
rather than taking turns. In other words, both copies of a gene are
turned on when one of them should be silent, and the result is a genetic
error that may cause a developmental disorder.

Perils of reprogramming

In cloning, a scientist plucks the DNA containing the copies of all of
the mother and father's genes from a fully formed adult cell and inserts
it into an egg that has been stripped of its own nucleus of genes.
Because there is no conception to spark the creation of an embryo,
scientists must somehow reprogram that adult DNA back to the brink of
embryonic development as if fertilization had just occurred.

Reprogramming is perhaps the most active area of cloning research, but
scientists do not know how to do it. So they must insert the DNA from
adult cells into dozens or even hundreds of eggs, give a little jolt of
electricity to stimulate the cell to divide and keep their fingers
crossed. Most scientists agree that only about 1% to 2% of these attempts
in animals lead to a live birth. Of live births, only about 20% appear to
be normal.

The prevalence of genetic disorders in cloned animals and the lack of
knowledge about reprogramming are the primary reasons the scientists who
work on cloning and issues of reprogramming say they are skeptical that
anyone can clone a human without genetic errors, Beaudet and others say.

"Just from the scientific safety considerations alone, this is completely
appalling," says Schatten, who is leading efforts to clone rhesus
monkeys, efforts that have been unsuccessful. "Those of us actively
engaged in research cloning have invested years and years of dedicated
efforts and have encountered enormous difficulties in generating a
single" cloned embryo.

Congress introduced another bill Jan. 8 to make human cloning in the USA
illegal. But it has been unable to pass a number of anti-cloning bills
because the bills have included a ban on research using cloning
techniques to create stem cells.

Researchers want to create tiny pre-embryos - a ball of cells that have
not yet taken any form - as sources of stem cells; this type of research
is called therapeutic cloning. Supporters believe these primordial stem
cells hold promise for treating a wide range of disorders including
Alzheimer's, cancer and diabetes. They fear that the bath water will be
thrown out with the baby and that Congress will ban embryonic stem cell
research.

Opponents say it is immoral to use human embryos for research. Obtaining
stem cells means destroying the embryo, which many people consider the
same as abortion.

But some experts believe the real stake in the heart of human cloning
will come the first time angry parents sue a laboratory or a doctor over
a genetically damaged cloned child. A strong case for malpractice could
be made. And the same arguments that scientists are making today against
human cloning will become fodder for expert witnesses.

"People will forgive a health care provider for making a mistake as long
as enough basic information was provided in advance, and the alternative
to a treatment was death or a miserable life," says Scott McMillen of
McMillen, Reinhart and Voght, malpractice attorneys in Orlando. "But in
cloning we're not trying to save a life. We're trying to create a life
from scratch, and to do that with negligence would be actionable. And
ultimately it is a jury that will decide whether there was negligence."

Defense attorneys might be hard pressed to find a sympathetic jury. A USA
TODAY/CNN/Gallup PollJan. 3-5 shows 86% of Americans say human cloning
should be illegal.

Boisselier says the parents of the supposedly cloned children created by
Clonaid all have "agreed to share the risk." But Murray says parents can
change their minds and sue, and the people who are so eager to clone
humans should recall the Jesse Gelsinger case.

Headed to the witness stand

Gelsinger died Sept. 17, 1999, at age 18, four days after entering a
gene-therapy experiment at the University of Pennsylvania to treat his
inherited liver disorder. At first, Gelsinger's parents were sympathetic
to the scientists. But as information emerged about risks and side
effects that Gelsinger and his parents were never told about, they sued
the hospital and everyone involved in the experiment.

Gelsinger's parents stated in the lawsuit that risks were downplayed and
that the doctors were negligent in performing the experiment. The
university settled the suit for an undisclosed amount.

McMillen says human cloning raises key questions of informed consent.
Boisselier and Zavos have testified before Congress that human cloning in
their hands is not as risky as animal cloning and that they are unlikely
to create damaged babies. In a trial, those comments could come back to
haunt them as they face cloning experts as expert witnesses for plaintiffs.

"I expect that the animal cloners who have said that it is too soon to
clone humans would rally to the witness stand," McMillen says.

What is unknown is whether parents can recover anything from a group that
has few assets, whether cloners that perform procedures outside the USA
are liable or whether the cloners will have malpractice insurance.

What is certain is that parents of cloned children who have genetic
defects will face high medical costs, and someone will have to pay the
bills. Imprinting disorders that cause mental retardation and physical
abnormalities carry medical costs of $1 million to $20 million over the
lifetime of the child, says Beaudet, who treats children with imprinting
disorders.

"There are many longer-term issues to be considered, such as: If we in
fact develop this human cloning technology, who will have access to it,
and who will pay for the procedures, and who will pay for the medical
care if these children are born with medical defects?" asks Mark
Rothstein, director of the Institute for Bioethics, Health Policy and Law
at the University of Louisville.

Would insurance cover?

Experts in the health insurance industry say the questions have not been
addressed on whether infants born with genetic disorders caused by
cloning would or should be covered. But legal experts say insurers might
be justified in denying coverage if an infant is born as the result of a
procedure that mainstream science says is likely to cause birth defects.

At the moment, however, insurers believe they might be obligated to pay
for costs. "Obviously this is a new area," says Susan Pisano of the
American Association of Health Plans, which represents the managed-care
community. "Traditionally whether or not there has been some technology
or procedure that has led to a pregnancy, the baby has been covered as a
dependent. It is important to look at the safety aspects of this.

"But I also think discussions about these new developments need to be
broad. This is an issue for all of society."

Several insurance companies declined to comment on the record. But all
suggested that unless changes are made to specifically exclude cloned
babies, the babies would be covered under group health plans. Individual
plans could exclude a high-risk clone.

Murray says he is concerned for the people who would want to have
themselves cloned. Boisselier, Zavos and Antinori have said the couples
seeking their business are motivated by the desire to have a child who
has their genes or to re-create a child who died.

Murray, whose daughter was murdered in 2000, says it reflects "despair,
grief and narcissism run wild. These aren't wicked motives, but trying to
spare yourself the grief reflects a deep misunderstanding. Grief doesn't
work that way, and cloning will not bring back a child."

These parents must realize that a clone has a good chance of being brain-
damaged. A narcissist might end up with a mentally retarded version of
himself or herself.

Just a few years ago, human cloning appeared to be something that would
be left to science fiction while mainstream scientists pursued cloning
techniques to create medical therapies. Scientists seem baffled that two
fertility specialists and the Raelians have commandeered the debate with
unsubstantiated claims.

Murray says it is tragic.

"People will keep claiming to have created cloned babies, and eventually
someone will succeed, but at what cost? A lot of damaged children and
disappointed parents.

"That is the very sad baggage that cloning will carry into the world."