Forum Bioethik

Note:  Human Genetics News has resumed services.  This is the first of two
weekly mails, for the period that we were away, to help bring you to date
with current news.  We hope you find this helpful.

Week Ending February 22, 2002

Contents
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 patent rethink

1.
Published on Monday, February 18, 2002 by the Inter Press Service
Opposition Stalls Genetic Profiling Plan for Tonga by Bob Burton

CANBERRA - A proposal by an Australia-based biotechnology company to
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
our genes.

Lopeti Senituli Tonga Human Rights and Democracy Movement

Thus, the director of the Tonga Human Rights and Democracy Movement, Lopeti
Senituli, is insistent that the Melbourne-based company Autogen should
clearly state whether it has abandoned the project or not.

''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
Thursday.

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 common diseases
using the unique population resources in the Kingdom of Tonga''.

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 associated
diseases common among Tongans.

While Autogen is a small fish in Australia's expanding biotechnology sector,
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 board.

While Autogen is politically well connected, it did not anticipate the
reaction to its proposal.

Senituli, whose group proposes major democratic reforms away from reliance
on the Tongan monarchy, objected to the secrecy surrounding Autogen's
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 discussions. Later,
he denied having signed any agreement.
According to Bob Phelps, director of the Australian-based non- government
organization GeneEthics Network, Tonga was the first country to sell human
genetic information.

''The significance of the Tonga proposal is the extent to which absolute
rulers and governments are prepared to go to cooperate with commercial
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 on bioethics
involving church and community leaders from throughout the Pacific region.

The conference resolved to oppose ''all forms of genetic engineering'' and
cloning because ''the conversion of life forms, their molecules or parts
into corporate property through patent monopolies is counter-productive to
the interests of the (people) of the Pacific''.

While Autogen stated its intent to support prior informed consent of
volunteers willing to give blood samples, the churches insist that such
decisions would have to also consider the collective rights of the extended
family.

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 market.

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 interest in
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 more than
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,'' he said.

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
 

2.
China Daily
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 from society.
Scientific research must respect human dignity.

In fact, the United States, Australia and India have enacted laws requiring
doctors and researchers to inform individuals of their treatment or
research.

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 they were
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
time."

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 Harvard projects,
indicates that the blood taken is part of a genetic study co-sponsored by
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 projects involved
blood collection in poor areas in Anhui. Xu claimed in earlier media
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
asthma project.

Amidst the controversy over the bioethics of Harvard projects in Anhui, the
Washington Post ran a report last June, saying two Chinese officials told
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 of Human
Genetic Resources, said in a conference on August 8, 2001 that no official
from the administration was authorized to meet US Embassy officials in
Beijing and no official was authorized to make that statement.

Even the Chinese authorities' investigation on the Harvard projects in
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 principles
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
http://www.boston.com/dailyglobe2/214/nation/Harvard_affiliated_gene_studies
_in_China_face_federal_inquiry+.shtml ]

[**See, John Pomfret and Deborah Nelson, An Isolated Region's Genetic Mother
Lode.  o Chinese Human Genome Project o Millenium Pharmaceuticals o Harvard
School of Public Health The Washington Post,  Dec. 20, 2000. Front page.
http://www.washingtonpost.com/wp-dyn/articles/A26797-2000Dec19.html ]

[See also, John Pomfret, Harvard Rebukes Head of China Gene Study. Thursday,
August 9, 2001; Page A14
http://www.washingtonpost.com/wp-dyn/articles/A49656-2001Aug8.html ]
 

3.
Taiwan Bans Human Cloning in Stem Cell Research
Wed Feb 20, 6:04 AM ET
TAIPEI (Reuters) - Taiwan's health authorities said Wednesday they have
decided against human cloning in embryonic stem cell research due to ethical
considerations.
"We had held three public hearings to discuss the issue because we need to
listen to different ideas before coming up with a consensus," Chen I-an,
section chief at the Department of Health (DOH), told Reuters by telephone.
"We decided to ban human cloning, and it's effective immediately," Chen
said.
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 of Taiwan's
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 and suddenly
find out our research is contradictory to regulations," said Dr. Chou
Shiu-huey, assistant professor at Fu Jen Catholic University's Department of
Biology.
Experts believe human embryonic stem cells hold promise for treating serious
conditions such as diabetes, hereditary diseases, Parkinson's disease,
Alzheimer's disease and spinal cord injuries.
 

4.
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 indefinitely, experts
said at a meeting of the American Association for the Advancement of
Science.
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 intelligent, said
Matthew McGue, a University of Minnesota psychology professor who
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 intelligence and
behavior to be more elusive and complex than had been expected a few years
ago.
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, said Jonathan
Beckwith, a professor of microbiology and medical genetics at Harvard
Medical School.
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 said, for
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 long-standing
nature-nurture arguments about intelligence and behavior, several experts
said.
Beyond science circles, the media and policymakers have been too quick to
generalize results from preliminary research findings, they said.
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 placed in
stimulating and encouraging adoptive homes show that such an environment can
help improve IQ, McGue said. And the opposite environment could suppress
some natural potential.
Factors outside the home make a difference too. IQs have risen phenomenally
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,
he said.
The reason could be the same reason that people have grown taller during the
same time span: improvements in nutrition and health care.
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 demanding environment.
(Distributed by Scripps Howard News Service, http://www.shns.com
<http://www.shns.com/> .)
 

5.
Baby with selected gene born in Britain
'Proud' fertility specialist awaits UK approval for cell technique
James Meek, science correspondent
Guardian
Saturday February 16, 2002
A joyful couple were celebrating at home in Britain yesterday with the
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 leukaemia.
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
procedure.
Mohamed Taranissi, the fertility specialist who anticipates getting the
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 advance of
implantation in the womb for "positive", subjective characteristics such as
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 designer babies.
"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 cherished for
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 arguments when
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
compatible marrow.
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 particular
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 illnesses," said
Mr Taranissi, whose clinic works jointly with the Chicago clinic which
carried out the genetic screening. "I feel very proud. This is the start of
something hopeful. I'm not an emotional person but yesterday I was."
 

6.
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 and enhance
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 molecular
genetics department.
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 Pittsburgh agrees.
"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
compete.
But researchers are looking for ways to make detection easier.
"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
explains.
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 regulated."
"If I can have a doctor's approval on things, I am the first person to sign
up for it," she adds.
 

7.
Gene Mappers May Have Missed Half The Genes
Matthew Herper <javascript:newWindow('Herper')> ,
02.20.02, 1:55 PM ET
Forbes.com
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
cures.
New research from several fronts suggests that the Human Genome Project
(HGP) and Celera (nyse: CRA
<http://www.forbes.com/finance/mktguideapps/compinfo/CompanyTearsheet.jhtml?
tkr=CRA>  - news
<http://www.forbes.com/markets/company_news.jhtml?ticker=CRA>  - people
<http://www.forbes.com/peopletracker/results.jhtml?startRow=0&name=&ticker=C
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
(nyse: MRK
<http://www.forbes.com/finance/mktguideapps/compinfo/CompanyTearsheet.jhtml?
tkr=MRK>  - news
<http://www.forbes.com/markets/company_news.jhtml?ticker=MRK>  - people
<http://www.forbes.com/peopletracker/results.jhtml?startRow=0&name=&ticker=M
RK> ), and elsewhere also see evidence that the gene mappers missed a lot of
genes.

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 for proteins?
"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 word-search game.
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 relied on
new genes being similar either to known human genes or to genes found in
animal genomes (like those of the mouse), Velculescu says. These
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 Cambridge, Mass.-based
Genzyme Molecular Oncology (nasdaq: GZMO
<http://www.forbes.com/finance/mktguideapps/compinfo/CompanyTearsheet.jhtml?
tkr=GZMO>  - news
<http://www.forbes.com/markets/company_news.jhtml?ticker=GZMO>  - people
<http://www.forbes.com/peopletracker/results.jhtml?startRow=0&name=&ticker=G
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 made.

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 Velculescu
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

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