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ngin - Norfolk Genetic Information Network
Designer Kidz

Goodbye Ancient Mystery 
- the Call Of The Wild is history. 
We'll weed out indigenous sperm 
with the aid of a smart designer-germ 
Select the hot shots that we need
for a cleaner, leaner, meaner breed, 
A gene elite in a righteous war
to waste whatever was on Earth before 

- Seize the Day

HUMAN GENETICS: troubled past/present danger

CONTENT
The background:  good genes/bad genes
Mining the genome
Patents on life
Gene therapy: at the crossroads
Designer babies: human germline 'gene therapy' and cloning
Scientists and scholars supporting ‘germline’ genetic engineering
Scientists and scholars supporting human cloning
Relevant reports and articles
Relevant websites
E-mail list
Relevant books



The background:  good genes/bad genes

Human genetics is a science with a troubled past.

"No group of experts should be more aware of the hazards of unwarranted claims than geneticists," according to David Suzuki, a professor of genetics. "After all, it was the exuberance of geneticists early in this century that led to the creation of a discipline called eugenics. These scientists were every bit as clever, competent, and well-meaning as today's genetic engineers."

Suzuki goes on to point out that it was the enthusiastic claims of the early geneticists on improving health and intelligence through encouraging the survival of "good genes" (eu-genics means literally 'good genes') which:

"...provided scientific respectability to the US prohibiting interracial marriage and immigration from countries judged inferior, and allowed sterilization of inmates of mental institutions on genetic grounds. In Nazi Germany, geneticist Josef Mengele held peer-reviewed research grants for his work at Auschwitz. The grand claims of geneticists led to 'race purification' laws and the Holocaust."
[from "Experimenting with Life"]

The fashion for eugenics had an international impact and its effects still reverberate around the world today. Only recently, for example, came reports of 15,000 forced sterilisations that have taken place in France  Another recent article reports on an experiment in which thousands of South American indians were deliberately infected with measles by a US scientific team of genetic researchers, killing hundreds This scientific atrocity has taken a decade to uncover.

The UK has also been far from free of such influences, as anyone can see by checking out the membership of the British Eugenics Society and seeing just some of the formal badge wearers among the many scientists and others influenced by this fashion. Among the list of the Society's many eminent members is to be found RM Acheson, former Prof. of Community Medicine at Cambridge University and a member of the General Medical Council's Executive Committee. Prof Acheson is also the brother of the UK's former Chief Medical Officer, Sir  Donald Acheson. One British Society member, incidentally, faced prosecution over his alledged responsibility for around 50 cases of infanticide.

For the originators of eugenics, the actual means of encouraging the survival of 'good genes' and of discouraging the survival of 'bad genes' were fairly crude, eg sterilisation. Today the options, particular in the light of the growing number of genetic tests, are greater. It is in this context that we should see comments like that of Bob Edwards, the world-renowned embryologist and IVF pioneer, who  is on record as saying, "Soon it will be a sin for parents to have a child that carries the heavy burden of genetic disease."  (Sunday Times, 4 July 1999)

Today's fashionable leading-edge in genetics centres on biotechnology which has given us the ability to tamper with the very blueprint of life.

And if this raises profound dangers, then this time the risks of scientific fashion are also compounded by massive commercial interests as well a continuing background of eugenic thought.

Mining the genome

"To-day, we are learning the language that allowed God to create life."

So said President Clinton when he announced the 'completion' of the human genome map on 26th June 2000. The media waxed equally lyrical, telling us the result of such sequencing would be the ability to identify all the 'bad' genes that cause diseases, such as cancer, and the 'good' genes that make us intelligent, beautiful, athletic and so on.

Special medicines, all kinds of genetherapy, a prescription of lifestyle based on our particular genetic makeup, all these we are told science is making possible, even inevitable.

Yet the causes of human ill health are overwhelmingly environmental and social. In fact, so-called 'single gene diseases' account for less than 2% of all diseases.

Thus the focus on genes in tackling disease is diverting attention and vast resources away from the real causes of ill health. Indeed while killers like cancer and heart disease have their genetic components investigated, there are people in the public health domain crying out for resources that will enable them to tackle the problems before they materialise.

Ten years earlier when the Human Genome Project was being launched, the promises were even greater. It would give us the blueprint for making a human being . A decade later geneticists still do not have a clue as to how to make even the smallest microbe. In fact, up to 95% of the human genome is described as consisting of what is known as 'junk DNA', because geneticists have simply no idea what functions it serves.

Patents on life

The race to understand the genetic information (genomes) of humans, plants and animals is being fuelled by more than just a thirst for knowledge.

Researchers and private companies are vying with each other to be the first to identify genes and what they do in the hope of major commercial gain via patents.

Indeed the thirst for patents is leading to the plundering of the knowledge and genetic resources of peoples in both the developed and developing world, sometimes under false pretext and without their informed consent. This is sometimes termed 'Biopiracy'.

President Clinton and Britain's Prime Minister Tony Blair have announced a pledge to stop knowledge and use of information about the human genome being restricted, but this has only lulled people into believing that something has actually been done. In fact, as Dr Sue Mayer of GeneWatch UK writes:

"... whilst Blair and Clinton try to look good in public, they are in fact presiding over the wholesale monopolisation of genetic information. The commercialization and privatization of the human genome was not slowed by the announcement. In fact for the most part, the patenting and privatizing of the genetic information contained in the human genome has already taken place."
[from "PRIVATISING KNOWLEDGE, PATENTING GENES".  See also RAFI's "DeCodeing the Clinton/Blair Announcement"]

The truth is that many human genes and cell lines are now owned by corporations, and patents are even being advertised and sold on the internet.

Gene therapy: at the crossroads

The patenting of life - of genes and of living organisms - underlies genetic engineering, the technological manipulation of DNA (genetic material).  History, however, warns us that despite our enthusiasm for technological intervention, there is often a cost, particularly when our knowledge of how nature works is so limited.

According to Dr Richard Nicholson, editor of The Bulletin of Medical Ethics, the record of the current fashion for gene therapy is already looking alarmingly suspect:

"Ten years ago we were being told that gene therapy was the greatest thing since sliced bread. Today its record stands at: Cures: nil. Deaths: 5.  Major adverse effects: at least a thousand."

Not surprisingly, some observers have suggested that gene therapy might more accurately be termed "genetic experiments on human subjects."

A Washington Post article about the death of one of those subjects -  an18 year old named Jesses Gelsigner who died in September 1999 at the Institute for Human Gene Therapy at the University of Pennsylvania - reports:

""The University of Pennsylvania, where Gelsinger died, is in many ways representative of the new world of gene therapy. It has allied itself with several financially interlinked biotechnology companies. These firms stood to gain financially if the Gelsinger study had proved successful, including one founded by the leading geneticist in that study."
['Gene Therapy's Troubling Crossroads: A Death Raises Questions Of Ethics Profit, Science' , Washington Post, December 31, 1999]

According to the article, increasingly talk at Penn was about "patents rather than patients", and even while Gelsinger was dying, corporate researchers were busy battling the US regulators, NIH, to keep the serious injuries or deaths in their gene therapy studies from becoming public.

Gelsinger, incidentally, was not only young but, according to an editorial in The Lancet, 'had ornithine decarboxylase deficiency, which is controllable by diet and drugs'  (The Lancet, vol 355, January 29, 2000).

There are good reasons, then, for caution about current scientific panaceas, particularly when such "leading-edge" approaches are fuelled not only by fashion but by powerful commercial interests.

Designer babies: human germline gene therapy and human cloning

Also being promoted is a particular form of gene therapy known as "human germline" gene therapy. Human cloning is also being contemplated.  In fact, human embryos are already being cloned for research purposes with a view to providing cells and tissues for transplantation.

Germline gene therapy involves changing the genes in human eggs, sperm, or very early embryos, in other words modifying the genes passed to our children.  Such genetic modifications would be replicated in all subsequent generations, allowing supporters of germline modification to claim that "we" are on the brink of "seizing control of human evolution."

Such predictions of a 'race' of genetically engineered humans can seem too absurdly futuristic to need taking seriously, but as Richard Hayes points out:

"Well below the radar screen of both the general public and policy makers, a concerted campaign is underway to perfect and justify the
technologies that would allow the engineering of 'designer babies.' "
["In the Pipeline: Genetically Modified Humans?"]

If such an agenda, with an emphasis often on 'desirable' designer traits such as greater intelligence, beauty or athleticism, appears grotesque, then just as disturbing is the eagerness of many scientists to authoritatively declare this kind of genetic engineering of humans "inevitable."

Needless to say, the biotech industry is actively developing the technologies that would make it possible to offer human germline engineering on a commercial basis.

Already Geron Corporation of Menlo Park, California, holds patents on applicable human embryo manipulation and cloning techniques. In the UK the Blair Government has given the go-ahead to embryo cloning for research purposes.

Scientists have even successfully produced an embryonic pig-human hybrid. Human DNA was inserted into pig cells which became tiny embryos. [Source: http://www.sunday-times.co.uk/news/pages/sti/2000/10/08/stifgnaus01001.html ]

Similarly, Richard Hayes notes that:

"Advanced Cell Technologies (ACT) of Worcester, Massachusetts, announced last year that it had created a viable human/bovine embryo by implanting the nucleus of a human cell into the egg of a cow.  No laws exist that would have prevented this transspecies embryo from being implanted in a woman's uterus in an attempt to bring a baby to term.  The baby would contain a small but significant proportion of cow genes."
["In the Pipeline: Genetically Modified Humans?"]

As ever with genetic technologies, the commercial interests are rife while regulation is lax to non-existent.

Public oncern over genetic engineering is growing rapidly around the world.  That concern will only intensify as the public is made aware of the plans to produce genetically modified humans within the forseeable future, and the support for the inevitable use of the technologies concerned that is coming from within the very heart of the science establishment. The leading fertility expert Lord Robert Winston, for example, in his address to the Royal Society on receiving the Michael Faraday Award argued that not only would we "certainly be able to make transgenic humans" but that such transgenic engineering was "inevitable" ["Genetically Modified Babies Inevitable"  - an article by Ann Ashburner, OTC (COMTEX Newswire): Grahamstown (East Cape News, February 3, 2000)]

Many other figures within the science establishment are making similar claims (see below).

The claims of inevitability and benefit put forward by the promoters of a designer-baby future need to be challenged. As Dr Marcy Darnovsky writes:

"Because human beings are far more than the product of genes--because DNA is one of many factors in human development--the feats of genetic manipulation eventually accomplished will almost certainly turn out to be much more modest than what the designer-baby advocates predict.  But we cannot dismiss the possibility that scientists will achieve enough mastery over the human genome to wreak enormous damage--biologically and politically."
["The New Eugenics: The Case Against Genetically Modified Humans"]


Selected recent statements from scientists and scholars concerning ‘germline’ genetic engineering:

Lester Thurow, professor of economics, Sloan School of Management, MIT:
"Some will hate it, some will love it, but biotechnology is inevitably leading to a world in which plants, animals and human beings are going to be partly man-made... Suppose parents could add 30 points to their children’s IQ.   Wouldn’t you want to do it?  And if you don’t, your child will be the stupidest child in the neighborhood."

New Scientist editorial: "The Last Taboo: If genetic engineering could be made safe, would you let your baby have it?":
"...if you ask would-be parents if they’d like to give their children a head-start at school or on the athletics track, don’t be surprised to find that the opposition is less than absolute... It would be a mistake to expect the taboo on human genetic engineering to last forever."

James Watson, Nobel laureate and founding director of the Human Genome Project:
"...if we could make better human beings by knowing how to add genes, why shouldn’t we?  What’s wrong with it?...Evolution can be just damn cruel, and to say that we’ve got a perfect genome and there’s some sanctity to it?  I’d just like to know where that idea comes from.  It’s utter silliness."

Gregory Pence, professor of philosophy in the Schools of Medicine and Arts/Humanities at the University of Alabama:
"Many people love their retrievers and their sunny dispositions around children and adults. Could people be chosen in the same way? Would it be so terrible to allow parents to at least aim for a certain type, in the same way that great breeders...try to match a breed of dog to the needs of a family?"

Francis Fukuyama, professor of public policy at the Institute for Public Policy at George Mason University :
"Biotechnology will be able to accomplish what the radical ideologies of the past, with their unbelievably crude techniques, were unable to accomplish: to bring about a new type of human being... Within the next couple of generations...we will have definitively finished human History because we will have abolished human beings as such. And then, a new posthuman history will begin."

Gregory Stock, Director of UCLA’s Program on Medicine, Technology and Society:
"Once people begin to reshape themselves through biological manipulation, the definition of human begins to drift.... Altering even a small number of the key genes regulating human growth might change human beings into something quite different....But asking whether such changes are ‘wise’ or ‘desirable’ misses the essential point that they are largely not a matter of choice; they are the unavoidable product of...technological advance..."

Lee Silver, professor of molecular biology and neuroscience at Princeton University:
[In the future...] "The GenRich—who account for 10 percent of the American population—all carry synthetic genes....All aspects of the economy, the media, the entertainment industry, and the knowledge industry are controlled by members of the GenRich class....Naturals work as low-paid service providers or as laborers... [Eventually] the GenRich class and the Natural class will become...entirely separate species with no ability to cross-breed, and with as much romantic interest in each other as a current human would have for a chimpanzee...But in all cases, I will argue, the use of reprogenetic technologies is inevitable...whether we like it or not, the global marketplace will reign supreme."

ABC NEWS.com;  Arthur Caplan is Director of the University of Pennsylvania Center for Bioethics:
"Absolutely, somewhere in the next millennium, making babies sexually will be rare,"[bioethicist Arthur] Caplan speculates.  Many parents will leap at the chance to make their children smarter, fitter and prettier."

SOURCES OF ABOVE QUOTES: New Scientist editorial October 23, 1999 http://www.newscientist.com/ns/19991023/editorial.html / Watson: Gregory Stock and John Campbell, eds., 2000.  Engineering the Human Germline (New York: Oxford University Press) pp.  79, 85. /Pence: G. Pence, 1998. Who’s Afraid of Human Cloning? (New York:  Roman & Littlefield) p. 168. /Silver: L. Silver, 1997. Remaking Eden:  How Cloning and Beyond Will Change the Human Family (New York: Avon Books) pp. 4-7, 11.  /Fukuyama: F. Fukuyama, "Second Thoughts: The Last Man in a Bottle," The National Interest, Summer 9299, pp. 28, 33. /Thurow: L. Thurow, 1999. Creating Wealth: The New Rules for Individuals,  Companies and Nations in a Knowledge-Based Economy (New York: Harper Collins) p. 33. /Stock: G. Stock, 1993. Metaman: The Merging of Humans and Machines into a Global Superorganism (New York: Simon & Schuster) pp. 165, 168.  ABCNEWS.com:  http://abcnews.go.com/ABC2000/abc2000living/babies2000.html.

for more on some of these examples, see: http://members.tripod.com/~ngin/12.htm



Statement of support for human cloning -- signatories include:

Sir Hermann Bondi, Fellow of the Royal Society, Past Master, Churchill College, Cambridge University, UK
Francis Crick, Nobel Laureate in Physiology, Salk Institute, U.S.A.
Richard Dawkins, Professor of Public Understanding of Science, Oxford University, UK
José Delgado, Director, Centro de Estudios Neurobiologicos, Spain
Herbert Hauptman, Nobel Laureate, Professor of Biophysical Science, S.U.N.Y., U.S.A
Sergei Kapitza, Chair, Moscow Institute of Physics and Technology, Russia
Simone Veil, Former President, European Parliament, France
Edward O. Wilson, Professor Emeritus of Sociobiology, Harvard University, U.S.A.

Declaration in Defense of Cloning and the Integrity of Scientific Research

...We see no inherent ethical dilemmas in cloning nonhuman higher animals. Nor is it clear to us that future developments in cloning human tissues or even cloning human beings will create moral predicaments beyond the capacity of human reason to resolve. The moral issues raised by cloning are neither larger nor more profound than the questions human beings have already faced in regards to such technologies as nuclear energy, recombinant DNA, and computer encryption. They are simply new.

Historically, the Luddite option, which seeks to turn back the clock and limit or prohibit the application of already existing technologies, has never proven realistic or productive. The potential benefits of cloning may be so immense that it would be a tragedy if ancient theological scruples should lead to a Luddite rejection of cloning. We call for continued, responsible development of cloning technologies, and for a broad-based commitment to ensuring that traditionalist and obscurantist views do not irrelevantly obstruct beneficial scientific developments.

SOURCE: Free Inquiry magazine, Volume 17, Number 3.



Relevant reports, briefings and articles

Human Genome -The Biggest Sellout in Human History
ISIS-TWN Report by Dr Mae-wan Ho

The New Eugenics: The Case Against Genetically Modified Humans
Article (on this site) by Marcy Darnovsky of the Exploratory Initiative on the New Human Genetic Technologies

PRIVATISING KNOWLEDGE, PATENTING GENES
GeneWatch UK briefing available as a pdf file

If Cloning is the Answer, What was the Question?
Sarah Sexton's in-depth Corner House briefing

Eugenics? Slipping down the slope
Article on genetic tests and disability

Xenotransplantation: How Bad Science and Big Business Put the World at Risk from Viral Pandemics
ISIS Report by Prof Jo Cummins and Dr Mae-wan Ho. For more on xenotransplantation see: animal gentics



Relevant websites
(if not specified websites are US based)

The Campaign Against Human Genetic Engineering (UK)
http://www.users.globalnet.co.uk/~cahge

The Council for Responsible Genetics
http://www.gene-watch.org

The Institute of Science In Society (UK-based)
http://www.i-sis.org
Directed by Dr Mae-wan Ho

Genetic Engineering and Its Dangers
http://online.sfsu.edu/~rone/gedanger.htm
Ron Epstein, SF State

The Foundation on Economic Trends
http://www.biotechcentury.org
Jeremy Rifkin's group

Campaign for Responsible Transplantation
http://www.crt-online.org
Anti-xenotransplantation.  For more on xenotransplantation see: animal gentics

For a traditional Jewish view on cloning:
http://www.us-israel.org/jsource/Judaism/clone.html



E-mail list
Techno-Eugenics Email Newsletter [recommended]
The Exploratory Initiative on the New Human Genetic Technologies (466 Green Street, San Francisco, CA 94133, USA, phone: 415-434-1403) is working to oppose genetic technologies especially human germline engineering and reproductive cloning, that foster eugenic ideologies and objectify and commodify human life.
To subscribe to its free on-line newsletter, or for other inquiries about becoming involved, please e-mail Marcy Darnovsky at   teel@adax.com


Relevant books

Andrews, Lori.  The Clone Age: Adventures in the New World of Reproductive Technology.  New York: Henry Holt, 1999.

Appleyard, Bryan.  Brave New Worlds: Staying Human in the Genetic Future. New York: Viking, 1998/ published in the UK in paperback as 'Brave New Worlds: Genetics and the Human Experience' by Harper Collins

Hubbard, Ruth and Elijah Wald.  Exploding the Gene Myth.  Boston and UK: Beacon Press, 1997

Kimbrell, Andrew.  The Human Body Shop: The Engineering and Marketing of Life.  New York: HarperCollins, 1993

Rifkin, Jeremy.  The Biotech Century  New York: Jeremy P. Tarcher /Putnam, 1998/ published in the UK in paperback by Phoenix

If you're in Norfolk, UK, phone 'Bookmark' for a fast efficient small bookshop ordering service: 01603 762855

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