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Week Ending February 22, 2002
1. Opposition Stalls
Genetic Profiling Plan for Tonga by Bob Burton
2. Farmers not well-informed
about gene probe
3. Taiwan Bans Human
Cloning in Stem Cell Research
4. Intelligence genes
prove hard to map
5. Baby with selected
gene born in Britain
6. Genetic enhancements
may be on horizon for athletes
7. Gene Mappers May
Have Missed Half The Genes
8. Demand for gene
Published on Monday, February 18, 2002 by the Inter Press
Opposition Stalls Genetic Profiling Plan for Tonga
by Bob Burton
CANBERRA - A proposal by an Australia-based biotechnology
establish a database of genetic information on the people
of the tiny South
Pacific nation of Tonga is floundering in the face of
strong opposition from
church and human rights groups.
Three centuries ago they came for sandalwood. Today the
bastards are after
Lopeti Senituli Tonga Human Rights and Democracy Movement
Thus, the director of the Tonga Human Rights and Democracy
Senituli, is insistent that the Melbourne-based company
clearly state whether it has abandoned the project or
''We really cannot afford to go back to the frontier days
when it was open
season on all things indigenous to the Pacific Islands,''
said Senituli, who
spoke at the Australasian Bioethics Association Conference
in Adelaide on
In November 2000, Autogen informed the Australian Stock
Exchange (ASX) that
it had signed an agreement with the Tongan Ministry of
Health to establish a
research project aimed at ''identifying genes that cause
using the unique population resources in the Kingdom
Tonga, composed of 170 islands and with a population of
100,000 people, was
attractive to Autogen as its population descended from
a small number of
people, thereby simplifying the search for genes potentially
diseases common among Tongans.
While Autogen is a small fish in Australia's expanding
it boasts as its chairman and largest shareholder, Joseph
Gutnick, one of
the leading businessmen from the Australian Jewish community.
Aside from his mining interests, Gutnick is a confidant
of former prime
minister of Israel, Benjamin Netanyahu, who in August
last year attended a
special forum on biotechnology co-hosted by Autogen.
Former Australian Labor
Party Prime Minister, Bob Hawke, is also on Autogen's
While Autogen is politically well connected, it did not
reaction to its proposal.
Senituli, whose group proposes major democratic reforms
away from reliance
on the Tongan monarchy, objected to the secrecy surrounding
proposal. ''We expressed opposition to it primarily because
there was no
public discussion'', he said.
At first, the Tongan minister for health claimed that
the agreement with
Autogen only committed the government to conduct further
he denied having signed any agreement.
According to Bob Phelps, director of the Australian-based
organization GeneEthics Network, Tonga was the first
country to sell human
''The significance of the Tonga proposal is the extent
to which absolute
rulers and governments are prepared to go to cooperate
interests to exploit every natural resource, including
the genes of their
own people,'' he said.
Autogen's proposal sparked region-wide concern amongst
the churches. In
March 2001, the Tongan National Council of Churches,
along with the
Geneva-based World Council of Churches, convened a conference
involving church and community leaders from throughout
the Pacific region.
The conference resolved to oppose ''all forms of genetic
cloning because ''the conversion of life forms, their
molecules or parts
into corporate property through patent monopolies is
the interests of the (people) of the Pacific''.
While Autogen stated its intent to support prior informed
volunteers willing to give blood samples, the churches
insist that such
decisions would have to also consider the collective
rights of the extended
Autogen's proposal flows from an alliance it formed with
Merck Lipha, a
subsidiary of the German pharmaceutical giant Merck,
which is funding the
search for gene discoveries involving weight imbalance,
diabetes and insulin
resistance. If genes associated with the diseases could
be identified, Merck
hopes it could develop new drugs for a potentially lucrative
While Autogen flagged economic benefits from the research,
such as jobs and
funding for a new medical research facility, Senituli
believes the benefits
from the proposal were heavily weighted in favor of Autogen.
''What they are
offering us is little, a drop in the ocean in comparison
to what Autogen is
bound to get if there is any success'', he said.
Stung by the opposition, the chief scientific officer
of Autogen, Professor
Greg Collier, insists the company no longer has any immediate
doing research work in Tonga.
''We are not actually doing anything in Tonga. What we
have decided to do
and this is a scientific decision and a resources decision
anything is to concentrate our resources into investigating
more into the
Tasmanian population (in Australia)'', he said.
But Senituli is not reassured. ''What intrigues us is
why Autogen has not
removed the reference to Tonga from its website, why
has the stock exchange
not been told and why is Merck in Germany telling everyone
they have a
project in Tonga? This is what worries us'', he said.
Collier has no intention of issuing a clarifying statement
to the ASX or
removing the reference to the Tonga proposal from its
website. ''There is no
changing that ` it would look more like to me that we
are covering our
tracks. I think it is open to have anyone to discuss
what has happened in
the past as well as what is happening in the future,''
Even if Autogen retreats from Tonga, Senituli believes
that others will
follow in their footsteps in what he sees as the next
attempt to colonize
their resources. ''Three centuries ago they came for
sandalwood. Today the
bastards are after our genes,'' he said.
Copyright 2002 Inter Press Service
Farmers not well-informed about gene probe
(XIONG LEI) 01/10/2002
Chu Mianzhai, a farmer from Toutuo Town in Yuexi
County, Anhui Province,
disclosed in a letter that genetic studies conducted
by Harvard University
did not conform to standard ethics codes. The genetic
studies, using blood
collected from many farmers in China, aroused grave concern
from the public
after media exposure early last year (See China Daily
report: Health is not
enough, Page 9, April 9, 2001).
Some people point out that science, while important to
the advancement of
people and health, is not an autonomous entity independent
Scientific research must respect human dignity.
In fact, the United States, Australia and India have enacted
doctors and researchers to inform individuals of their
In his letter to me dated December 31, 2001, Chu recalled
how he signed the
so-called "informed consent form" that some investigators
have claimed he
signed in October 1997.
"At the time the Toutuo Hospital issued a document paper,
on which were some
tiny characters," he wrote. "What these words meant were
not discernible to
me (as I did not bring my reading glasses with me). Nor
did they (referring
to the people from the hospital) tell me what it was
for. I was just asked
to sign it. Perhaps it was the "informed consent form."
Chu, 61, and his wife and two daughters gave blood twice
to the Harvard
genetic study, without knowing which specific projects
participating in. In my interview with him at his home
a year ago, Chu said
he first gave blood in November 1996. He and his family
members were asked
to give blood again in March 1997, but "there were not
as many villagers the
first time," he said.
Some villagers declined to go the second time, he recalled,
"but I was
willing to do it because I wished to get some medical
treatment for my
daughters, especially the eldest one. She wheezes rather
severely in spring
But he said the expected treatment never came.
Toutuo was one of the sites for the Harvard genetic study
of asthma between
1994 and 1998, with Dr Xu Xiping of Harvard School of
Public Health as the
principal investigator. But Chu Mianzhai said he had
no idea about it, let
alone that the project was funded by the National Institute
of Health of the
United States (NIH).
The media's coverage of the issue, Chu wrote in his letter,
"is out of
responsibility for the collaboration project on genetic
studies as well as
for the ordinary Chinese people and the Chinese nation."
A sample "informed consent form" offered to me last January
by a local
doctor who was involved in the blood collection for the
indicates that the blood taken is part of a genetic study
Harvard University and some Chinese medical institutions.
In the fiscal year of 2000, Xu Xiping headed nine projects
funded with NIH
grants amounting to nearly US$ 4.2 million. All of these
blood collection in poor areas in Anhui. Xu claimed in
interviews that his projects would involve screening
200,000 Chinese. Some
American physicians were impressed that so many people
could be screened at
such a low cost.
By contrast, the number of collaborative projects approved
by the Chinese
Government up to January 2001 was only three, which did
not include the
Amidst the controversy over the bioethics of Harvard projects
in Anhui, the
Washington Post ran a report last June, saying two Chinese
the US Embassy in Beijing that the Chinese probes showed
up no evidence
against the projects.
However, Wang Yu, deputy director of the State Administration
Genetic Resources, said in a conference on August 8,
2001 that no official
from the administration was authorized to meet US Embassy
Beijing and no official was authorized to make that statement.
Even the Chinese authorities' investigation on the Harvard
Anhui, first conducted in late March of 2001, "have yet
to reach any
official conclusion," he said.
Medical people and journalists in China are continuing
to investigate the
case, to make sure that Chinese people's rights and bioethical
were not violated in cross-border genetic research.
The author is a senior journalist with China Features,
Xinhua News Agency.
[*See, Alice Dembner, The Boston Globe, Harvard-affiliated
gene studies in
China face federal inquiry, Aug. 1, 2000. front page
[**See, John Pomfret and Deborah Nelson, An Isolated Region's
Lode. o Chinese Human Genome Project o Millenium
Pharmaceuticals o Harvard
School of Public Health The Washington Post, Dec.
20, 2000. Front page.
[See also, John Pomfret, Harvard Rebukes Head of China
Gene Study. Thursday,
August 9, 2001; Page A14
Taiwan Bans Human Cloning in Stem Cell Research
Wed Feb 20, 6:04 AM ET
TAIPEI (Reuters) - Taiwan's health authorities said Wednesday
decided against human cloning in embryonic stem cell
research due to ethical
"We had held three public hearings to discuss the issue
because we need to
listen to different ideas before coming up with a consensus,"
section chief at the Department of Health (DOH), told
Reuters by telephone.
"We decided to ban human cloning, and it's effective
Embryonic stem cells are derived from embryos and have
the ability to
transform themselves into virtually any type of cell
in the body, allowing
scientists to regenerate damaged organs or tissue.
However, the research is highly controversial because
obtaining the cells
requires destroying the embryo.
A decision by President Bush to allow limited federally
funded research on
embryonic stem cells has been given extensive coverage
in Taiwan and
triggered heated debate on whether the island should
support research using
stem cells from human embryos.
DOH had said it was inclined to allow limited embryonic
stem cell research
as an overall ban on the research could stymie the development
nascent biotechnology sector.
Academics urged the government to enact related regulations
as soon as
possible for them to follow.
"We really hope the government can set up relevant laws
as soon as they can.
After all, we don't want to spend a long time doing research
find out our research is contradictory to regulations,"
said Dr. Chou
Shiu-huey, assistant professor at Fu Jen Catholic University's
Experts believe human embryonic stem cells hold promise
for treating serious
conditions such as diabetes, hereditary diseases, Parkinson's
Alzheimer's disease and spinal cord injuries.
Intelligence genes prove hard to map
By SHARON SCHMICKLE
Couples who have dreamed that genetic research might
enable them to produce
little Einsteins should put that expectation on hold
said at a meeting of the American Association for the
Despite widespread predictions that parents would use
new genetic tools to
select for smarter children, scientists haven't been
able to identify genes
that would tell whether a child is going to be highly
Matthew McGue, a University of Minnesota psychology professor
specializes in IQ studies.
Some genes that play a role in mental retardation have
been isolated, he
said. But McGue and other experts in behavioral genetics
said Sunday that
researchers are finding the genes that influence overall
behavior to be more elusive and complex than had been
expected a few years
Dozens of genes work together to influence intelligence,
it now appears,
much like an orchestra playing a difficult score. Scientists
are giving up
on earlier hopes for finding one or two prominent soloists,
Beckwith, a professor of microbiology and medical genetics
In terms of identifying all the significant players,
"putting together the
full orchestra is way, way off," he said.
Even if that were done, he said, "being able to safely
fiddle around with
that many genes is unimaginable."
Behavior geneticists should take some of the blame, Beckwith
having created simplistic expectations that it would
be easy to find a few
genes that could explain intelligence and behavior.
The contagious enthusiasm for gene hunting that dominates
so much scientific
research today obscured some important points in the
nature-nurture arguments about intelligence and behavior,
Beyond science circles, the media and policymakers have
been too quick to
generalize results from preliminary research findings,
About 150 genes and regions on chromosomes have been
identified in studies
as possibly influencing cognitive ability, McGue said.
"None of these are unequivocal at this point," he said.
The classic yardstick for genetic effects - comparative
studies of twins
reared apart and together - suggests that genetic factors
explain about half
of the variation on IQ tests.
But parents need not feel like passive players in the
shaping of a child's
intelligence because a home environment could even out
some of the
differences in natural intelligence. Studies of children
stimulating and encouraging adoptive homes show that
such an environment can
help improve IQ, McGue said. And the opposite environment
some natural potential.
Factors outside the home make a difference too. IQs have
over the past half-century, McGue said.
"The population is getting smarter at a remarkable rate
if we are to believe
IQ tests," he said.
Average IQs have risen between 3 and 5 points a decade
in several countries,
The reason could be the same reason that people have
grown taller during the
same time span: improvements in nutrition and health
McGue credited an improved education system, too. McGue
also speculated that
IQ is influenced by the fact that people increasingly
use their brains for
work and play in a technologically and intellectually
(Distributed by Scripps Howard News Service, http://www.shns.com
Baby with selected gene born in Britain
'Proud' fertility specialist awaits UK approval for cell
James Meek, science correspondent
Saturday February 16, 2002
A joyful couple were celebrating at home in Britain yesterday
country's first - and the world's second - baby to be
born with a desired
genetic characteristic known in advance.
The family say that their baby girl, who was born at
8pm on Thursday night
in a British hospital, is not a "designer baby", but
a much longed-for child
who brings with her into the world, as an extra gift,
cells capable of
saving her older brother if he suffers a relapse into
The family does not want to be identified, but does want
its story to be
known so that other families in similar circumstances
can benefit from the
Mohamed Taranissi, the fertility specialist who anticipates
go-ahead soon from the human fertilisation and embryology
authority to offer
the procedure at his London clinic, said three other
women were now pregnant
with such babies elsewhere in the world.
The designer baby tag has been bestowed by those who
fear the technique
could eventually be used to screen healthy embryos in
implantation in the womb for "positive", subjective characteristics
beauty or intelligence.
But no such genes have yet been found, nor is it certain
that they ever will
or could be. Mr Taranissi argued yesterday that it was
absurd to compare
Thursday's birth with the so-far imaginary concept of
"Nobody who had seen this couple when their baby was
delivered, the joy and
the tears, could doubt that this baby will be loved and
itself," said Mr Taranissi, who was at the hospital when
the baby was born.
"This will make people feel and see and realise this
technology is helpful,
and hopefully can be used by others. That's what I feel
very strongly about.
It's very easy to talk about all these ethical and immoral
you're not in this situation yourself."
The parents of the Valentine's Day baby have a five-year-old
son who is
recovering well from leukaemia after chemotherapy. But
he remains on the
danger list. If he suffers a relapse in the next few
years, he may require a
bone marrow transplant, with no certainty of a compatible
donor being found
in time. Other family members have already been tested
and do not have
The mother sought help from the scientists who carried
out the world's first
such procedure in the US, and they agreed to include
her in their programme.
She underwent IVF treatment, which involves fertilising
her eggs with her
husband's sperm in a petri dish in order to produce a
number of embryos for
implantation into her womb.
Unlike conventional IVF, however, the embryos underwent
genetic screening to
make sure that the one implanted in the womb had the
configuration of genes needed to ensure compatibility
in the event of a
transplant. The slur of "spare parts baby", sometimes
applied to the
procedure, does not apply, since the source of cells
for any transplant is
something which would otherwise usually be discarded
at birth - stem cells
from blood in the newborn baby's umbilical cord.
The Valentine's Day baby's cord blood was frozen in a
private cord blood
bank immediately after the birth.
One of the reasons the family has sought to make its
story known is the
enormous cost of the procedure if it involves travelling
to the US. They
hope it can be done in Britain for much less.
"This is what medicine is all about: preventing and curing
Mr Taranissi, whose clinic works jointly with the Chicago
carried out the genetic screening. "I feel very proud.
This is the start of
something hopeful. I'm not an emotional person but yesterday
Genetic enhancements may be on horizon for athletes
February 20, 2002 Posted: 3:47 PM EST (2047 GMT)
>From Rea Blakey
CNN Medical Unit
WASHINGTON (CNN) -- Doping scandals have become an almost
routine part of
modern sporting competitions, including the Olympics.
But many sports
scientists warn that performance-enhancing drugs may
be a thing of the past
when it comes to illicit ways to win.
Scientists on the forefront of genetic manipulation predict
that in as
little as five to 15 years, athletes may be using genetic
engineering to get
the edge over their opponents.
For instance, techniques evolved from animal research
at the University of
Pittsburgh could potentially be used to heal sports injuries
athletic performance. Scientists are injecting stem cells
into muscle cells
in hopes of helping children with muscular dystrophy.
"The growth factor that we're using, the stem cells that
we're using, the
gene therapy that we have been performing, can be used
to improve the
strength of a muscle," says Johnny Huard, of the university's
That means if the experiments work safely in humans,
the technique could be
used to increase an athlete's strength and endurance,
raising a host of
troublesome new issues for sporting officials.
"Genetic engineering will pose some very difficult problems
for sport," says
Larry Bowers of the U.S. Anti-Doping Agency, not least
because it could be
difficult -- if not impossible -- to detect.
Orthopedic surgeon Dr. Freddie Fu of the University of
"It's going to be a whole new ballgame," he says.
That's because for now, detecting a genetically modified
muscle requires a
biopsy of the tissue -- not a realistic proposition for
an athlete about to
But researchers are looking for ways to make detection
"What we're trying to do in our lab as well is to try
to detect byproducts
of those stem cells and growth factors that you can maybe
detect in the
blood, so in a way they will be able to test those athletes
later on," Huard
But many athletes and coaches are open to the prospect.
"Certainly athletes are always looking to improve their
performance as best
as possible," says U.S. Olympic figure skater Michael
Weiss, who has been
tested several times over the past three months to make
sure he's drug-free.
"Most athletes that are at the Olympic level are willing
to commit to just
about anything that would give them the edge," explains
Weiss' coach, Audrey
Wesinger. "I think (genetic engineering) has to be done
in a scientifically
sound manner where it's ethical and also very highly
"If I can have a doctor's approval on things, I am the
first person to sign
up for it," she adds.
Gene Mappers May Have Missed Half The Genes
02.20.02, 1:55 PM ET
NEW YORK - How many genes are nestled in a human being's
DNA? A year ago,
when the Human Genome Project and Celera Genomics unveiled
their maps of the
human genetic code, it seemed there was a definitive
answer: about 30,000.
But now that answer is turning out to be less than final,
with new data
suggesting there could be 70,000 or more human genes.
This is not just an angels-on-pinheads academic debate.
Most of what happens
in the body is guided, controlled or put into action
by workhorse chemicals
called proteins. Genes are recipes for these proteins.
Scientists hope to
discover whole constellations of genes that are linked
to diseases, and to
use these groups of genes to develop new drugs and diagnostic
tests. If half
the genes are missing from their maps, so too are half
the clues to new
New research from several fronts suggests that the Human
(HGP) and Celera (nyse: CRA
tkr=CRA> - news
RA> ) may have missed tens of thousands of genes. Victor
Velculescu, a young
assistant professor at Johns Hopkins University, reported
at the annual
meeting of the American Association for the Advancement
of Science meeting
in Boston this past weekend that his experiments indicate
there are at least
70,000 genes. Researchers at Rosetta Inpharmatics, a
subsidiary of Merck
tkr=MRK> - news
RK> ), and elsewhere also see evidence that the gene
mappers missed a lot of
When the HGP and Celera published their data, they had
already announced the
completion of their gene sequences from the White House
lawn. Celera founder
J. Craig Venter had been named Time's scientist of the
year. They were
expected to come out with at least one stunning conclusion
right off the
bat, and they did: Human beings had about 32,000 genes,
give or take several
thousand--not that much more than a fruit fly or a worm.
But things may be hazier than such hard figures might
make them seem.
Scientists are still shaky on the criteria for a gene.
How big does a gene
have to be? Might it have other functions besides coding
"Before you count genes, you really need to define what
a gene is," says
Daniel Shoemaker, director of target discovery at Rosetta.
No one is accusing either Celera or the HGP of simply
failing to notice
large swaths of DNA. Quite the contrary, everyone seems
to agree they did a
remarkable job transcribing the 3 billion rungs on the
DNA molecule, which
is shaped like a long, twisted ladder. The problem is
they didn't always
recognize when those rungs spelled out genes.
Actual genes are buried in stretches of what appear to
be gibberish DNA.
Picking them out is a bit like finding the words in a
Velculescu and other researchers think Celera and the
HGP mistook actual
genes for unintelligible DNA.
The software both Celera and the HGP ran on their supercomputers
new genes being similar either to known human genes or
to genes found in
animal genomes (like those of the mouse), Velculescu
computational methods are very powerful, but this time
around they may have
been too conservative. "If the mouse and human genomes
were so similar, we
would be mice," says Shoemaker.
To get a new gene count, Velculescu and his colleagues
used a different
technology called serial analysis of gene expression
(SAGE), which was
developed at Johns Hopkins University and licensed to
Genzyme Molecular Oncology (nasdaq: GZMO
tkr=GZMO> - news
ZMO> ). Genes don't create proteins directly. Instead,
a variety of
messengers take the genetic information from the cell's
inner sanctum, where
the DNA resides, to the outer parts where proteins are
Instead of recording genes themselves, SAGE records the
comings and goings
of certain messengers. At John Hopkins, Velculescu's
group managed to get
bigger records than had been used in earlier messages,
and then used them to
predict what the original gene looked like. This is tricky,
in part because
each gene produces more than one kind of messenger. While
stresses that he only looked at a sliver of the genome,
he extrapolates that
there must be a minimum of 70,000 genes.
He's not alone. Rosetta's Shoemaker says that his job
is to find drug
targets for Merck, not to put out gene count estimates,
but he does feel the
30,000 count is low. "In a sense, it's a much safer stance
to say there's a
lot more out there," he says. At Rosetta, Shoemaker and
his colleagues are
casting a wide net for genes, sifting through hundreds
of thousands of