ngin - Norfolk Genetic Information Network
Date:  12 March 2001
HUMAN  GENETICS - insurance tests/ Lee Silver/cloning

1.    German Minister Seeks Ban on Insurance Genetic Test
        Excerpt:  "Even if half the world's species were lost, enormous diversity would still remain,"
        Gregory Stock (UCLA) from his 1993 book, "Metaman: The Merging of Humans and
        Machines into a Global Superorganism."
3. Cloning creates ordinary children who grow up to be unique
*  *  *

1.    German Minister Seeks Ban on Insurance Genetic Test
        Reuters - 03/10

Germany's health minister wants to have a ban in place by next year on insurance companies
 requiring genetic testing to determine the liability of clients, Tagesspiegel newspaper reported on Saturday.

Genetic tests can predict who is likely to develop certain diseases and can tell insurance companies which potential clients are likely to need expensive care in the future.

"The government is now reviewing a possible ban," minister Ulla Schmidt told the newspaper. "Imagine that anyone who can produce a test showing no risk can get cheap insurance and the others can't get any at all. "If we don't do this we'll get a selection procedure we can no longer stop... I would like to act quickly with a law possibly in this legislature period," she said, referring to the parliamentary session that ends in 2002, when new national elections are scheduled. Justice Minister Herta Daeubler-Gmelin has previously backed a ban on genetic testing for insurance purposes, but in the newspaper interview Schmidt appeared to embrace a quicker plan of

German companies do not require genetic tests now but theoretically could under the current law. Different countries have taken varying approaches to the issue of genetic testing. Austria, for example, has banned them, but last October Britain backed insurers on the use of genetic testing to identify the hereditary risk of Huntington's disease, opening the door for approval of other tests.
* * *
       OF SHOES
       By Sally Deneen, E/The Environmental Magazine.  Chicago Tribune March 11, 2001

Princeton University microbiologist Lee Silver can see a day a few centuries from now when there are two species of humans--the standard-issue "Naturals" and the "Gene-enriched," an elite
 class whose parents bought for them designer genes and whose parents before them did the same, and so on for generations.

Want Billy to have superior athletic ability? Plunk down the cash. Want Suzy to be exceptionally smart? Just pull out the Visa card at your local fertility clinic, where the elite will likely go to enhance their babies-to-be. We may already be on the path to changing the very nature of nature.

Last June, with much fanfare, scientists with the taxpayer-supported Human Genome Project, working with the private Celera Genomics of Rockville, Md., announced that they had completed a working draft of a genetic blueprint for a human being. That was followed in February by disclosure of the first round of more detailed analyses of this gene research. About half of the genome sequence is in near-finished form or better; a quarter is finished.

The 15-year project is to be completed in 2005 at a budgeted cost of $3 billion--though some of
 that tax money is spent on other genomic research. Although the implications for longevity, health insurance and discrimination of this achievement have grabbed media attention, the ramifications for the environment--good and bad--haven't. How soon will all this happen?

Silver believes that by around 2010, parents will be able to genetically ensure their babies won't grow up to be fat or alcoholic and by 2050 arrange to insert an extra gene into single-cell embryos within 24 hours of conception to make babies resistant to AIDS. Already it is possible to insert
 foreign DNA into mice, pigs and sheep. The obstacles to inserting them in humans are mainly technical ones. At this point in human knowledge, it could lead to mutations.

Several techniques are under development to try to avoid that, however. "For the near and midterm future, we're looking at science fiction. You'd have to be terminally reckless to do that type of human engineering on people [with what we know now]," argues law professor Henry T.
Greely, co-director of the Program in Genomics, Ethics and Society at the Stanford University Center for Biomedical Ethics. To change a baby's eye color or hair color within a fertilized human egg "would be a very expensive and dangerous proposition for such trivial purposes," said Dr.

Marvin Frazier, director of the Life Sciences Division of the U.S. Department of Energy's Office of Biological and Environmental Research. Even when scientists figure it out, "it is likely that to achieve the desired goals would require a lot of experimentation, which translates into many
 hundreds or thousands of mistakes before you get it right." That means, Frazier said, "a lot of malformed babies and miscarriages."

To University of Washington professor Phil Bereano, among others, now is the time for us to talk about the ethical and societal implications of this Brave New World. But the Pandora's box may already be open: Many nations have banned human genetic engineering, but the United States has not.

"If scientists don't play God, who will?" said supporter James Watson, former head of the Human Genome Project, speaking before the British Parliamentary and Scientific Committee in June. "The key question is not whether human [genetic] manipulation will occur but how and when it will," said a confident Gregory Stock, director of the University of California at Los Angeles' Program on
 Science, Technology and Society in a report titled "The Prospects for Human Germline Engineering."

But there is no shortage of opposition to human engineering. The San Francisco-based Exploratory Initiative on the New Human Genetic Technologies seeks, among other things, to alert a largely unwitting public to what is going on. "It really is a nightmare vision," said Rich Hayes, who coordinates the campaign from his Public Media Center office. "Once we start genetically re- engineering human beings, where would we stop? We should have the maturity and wisdom to ban the modification of the genes we pass to our children."

The futuristic notion of choosing a child's genes from a catalog can certainly capture the imagination. But to Stuart Newman, professor of cell biology and anatomy at New York Medical College in Valhalla, N.Y., the effect on human biology could be analogous to transforming wild areas into artificial areas or wild food into artificial food. We "might be changing people into products--genetically engineered products," Newman said. "We believe that certain activities in the area of genetics and cloning should be prohibited because they violate basic environmental and ethical principles."

Proponents and critics alike envision a future in which those who can't afford gene enrichment will be relegated to second-class citizenship. "As far as I'm concerned, this thrill we have about the future will end up being one big elitist ripple," said Beth Burrows, director of the Edmonds Institute, a not- for-profit Seattle institute that works on issues related to environment, technology, ethics and law.

And what about the environment? Burrows said several important questions arise about genetic tampering: What are we creating? How will it affect the natural world? What will be the effect on evolution for each species? How will it change feeding patterns or food for other animals? Without understanding interactions, she said, "We may do some extremely stupid things. If people are concerned that there was such a severe backlash against genetically modified foods, I think they haven't seen anything compared to the backlash when we are able to alter the human genome
 in significant ways-- even insignificant ways,"

Burrows said. UCLA's Stock agrees that the impact of human genetic modification is profound, but he likes it. "This technology will force us to re-examine even the very notion of what it means to be human," he wrote in a recent report.

Ignacio Chapela of the University of California at Berkeley is troubled by other implications the Human Genome Project may bring for the natural world, including plants engineered specifically to produce human proteins, and pigs produced to have antigens that are more human, in a quest to help humans. To Chapela, proponents see the world as a sphere smeared with mix-and-match DNA. "Evolutionarily, it makes sense to have boundaries," he said, "and we're just willy-nilly breaking them down."

Stock isn't concerned about the effects of human genetic engineering on nature. "Even if half the world's species were lost, enormous diversity would still remain," he argues in his 1993 book, "Metaman: The Merging of Humans and Machines into a Global Superorganism."

  "We best serve ourselves, as well as future generations, by focusing on the short-term consequences of our actions rather than our vague notions about the needs of the distant future. . . . If medical science develops an easy cure for cancer, [nuclear] wastes may not be viewed as a
 significant health hazard after all," he continues.

Not so fast, says another architect of the modern world, Bill Joy, the father of Java software and co-founder of Sun Microsystems. Joy posits with some feeling of guilt that "our most powerful 21st Century technologies . . . are threatening to make humans an endangered species."

To combat the perceived inevitability of this Brave New World, Marcy Darnovsky, a Sonoma State University instructor who works with the Exploratory Initiative on the New Human Genetic Technologies, calls for three things:

First, a global ban on inheritable genetic engineering on humans; second, a global ban on human reproductive cloning; and third, an effective and accountable regulation of other human genetic technologies.
"This is no 'marginal' movement or way of thinking," Chapela said. "The group advocating
 human re-engineering includes extremely powerful, influential and wealthy people. So don't expect them to roll over easily or soon."

 For more information, contact the Council for Responsible Genetics, 617-868- 0870 or;  or the Human Genome Project, 865-576-6669 or
*  *  *
3.     Fertility Experts Present Plans As Last Frontier In Battle To Defeat Male Sterility
        By James Meek Science correspondent,  The Guardian (London) March 10, 2001

Rome: It is a contest they are unlikely to win, and one many believe should not be waged. But amid the chaos and doubt in Rome yesterday, it was clear, at least, that Severino Antinori and his partners had fired the starting gun in a race to produce a cloned human being.

Boasting of unlimited funds, a choice of six countries to work in and an embarrassment of scientific expertise, the Antinori private human cloning consortium set out its stall at a seminar in Rome's
 Institute of Clinical Obstetrics and Gynaecology. Or to put it another way, the consortium would not say where, when or how they would clone a human being, who would do it or how much it would cost.

Only the fact that Mr Antinori and his colleagues work with human embryos on a daily basis in their fertility clinics and their single-minded determination to use cloning to treat one straightforward
 problem - male infertility - prompted the thought: What if they pulled it off? Mr Antinori told the seminar - 90% of the delegates were, in fact, journalists - that his clinics had already begun sounding out clients. Of 300 male patients whose sperm was unsuitable to produce children, he
 said, 70% had asked to be given the opportunity to produce a cloned child.

Cloning may be the last frontier in our attempts to defeat male sterility,' he said. Cloning creates ordinary children who grow up to be unique individuals. We are here to encourage fruitful scientific
 research and good ethical behaviour.'

We do intend to clone the first human being,' said Panos Zavos, Mr Antinori's key partner, who runs a fertility clinic in Lexington, Kentucky. This is a solution to a human problem. We want to do it as soon as possible, but we have no intention of stepping over dead bodies.'

Later he said the first experiments to lay the groundwork for the cloning programme could begin within weeks, with the first cloned embryo ready for implantation in a mother's womb within one and a half to two years. He ruled out using the technology to try to clone dead children or famous people. The idea was to help men who had no sperm to have genetically related children without relying on a sperm donor. It's a dead-end street, it's a stop sign, if you're one of those males that face this particular difficulty, you think: God, why me? Why do I have to borrow sperm in order to get a child?" he said. Mr Zavos added that, unlike animal cloning programmes, they would not be
 implanting scores of embryos in many surrogate mothers in the hope of getting one successful pregnancy.

Twenty-three years of human IVF work had laid the basis for a more sophisticated approach, he said, involving screening embryos at the stage when they consisted of only a few cells to select the most likely to implant successfully, cultivating extra embryos from the best, and then implanting them in one mother.

The appearance of a third partner on the platform, Avi Ben Abraham, described as an Israeli-American biotechnologist, prompted speculation that the Mediterranean country' referred to as a possible site for the first human cloning attempt was Israel. But the consortium would not be drawn.

If the organisation of yesterday's seminar was anything to go by, would-be clonees would be advised to look elsewhere. In the cramped well of a dingy lecture theatre, the animated, silver-haired Mr Antinori and assistants beat off waves of camera crews and photographers as they made their presentations. At one point a man in a white coat entered and announced that the head of the department which ran the lecture theatre had been watching the seminar with mounting horror on CNN during a trip to China and strongly objected to an event supporting human cloning - condemned by the UN, the EU, the Council of Europe, the World Health Organisation and a
 catalogue of other bodies.

Towards the end, the hulking, bearded figure of Richard Seed, an early, discredited prophet of human cloning, unexpectedly took the floor. His last words before his microphone was cut off and he was led away were: I'm going to try to clone my wife first. I'm going to try to keep the first five clones in the family -

Real cloning is seen as lying in the realms of science. For now, it does. But the equipment and know-how required to at tempt to clone a human being is cheap and simple compared to that needed for a nuclear weapon or to put an astronaut in space. Reproductive human cloning is not technically illegal in Britain, but the Human Fertilisation and Embryology Authority would certainly refuse permission.

However, while some US states and countries, such as Japan, have banned it outright, others have not, and there are now few parts of the world without IVF centres: China, India and the former Soviet Union have many. The science of human cloning is much tougher. All labs which have succeeded in cloning animals report a massive failure rate, from embryos failing to implant in wombs to miscarriages and deformities at birth.

The only lab in the world to have successfully cloned an animal from the family to which humans belong, the primates, told the Guardian this week that it had given up further attempts until it understood what was going wrong. The Oregon Regional Primate Centre, which recently announced the birth of ANDi, the world's first genetically modified monkey, has never managed to clone a monkey using the Dolly technique, where an embryo is cultured from an adult cell. It has only ever done it with an older method, using a single cell from a natural embryo.

The centre's Don Wolf said: I think it's ridiculous to venture into the realm of human reproductive cloning. The risks are clearly unacceptable.

Antinori's research centre in Rome Raelian homepage Human Fertilisation and Embryology

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