There's now an introductory 'human genetics' section on the ngin website:
HUMAN GENETICS: Troubled past/present danger
- 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
- Relevant reports and articles
- Relevant websites
- E-mail list
- Relevant books
As well as the article below by Dr Marcy Darnovsky who works with the Exploratory Initiative on the New Human Genetic Technologies, there are also links to the following reports, briefings and articles, amongst others:-
Human Genome -The Biggest Sellout in Human History
by Dr Mae-wan Ho
The New Eugenics: The Case Against Genetically Modified Humans by Marcy Darnovsky [see below],
Privatising Knowledge, Patenting Genes
GeneWatch UK briefing
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
Prof Jo Cummins and Dr Mae-wan Ho
Different Takes No. 4, Spring 2000
A publication of the Population and Development Program, Hampshire College, Amherst MA 01002-5001 USA - phone 413/559-6046 fax 413/559-6045
Also published on ZNet
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The New Eugenics: The Case Against Genetically Modified Humans
by Marcy Darnovsky
At the cusp of dot-com frenzy and the biotech century, a group of influential scientists and pundits has begun zealously promoting a new bio-engineered utopia. In the world of their visionary fervor, parents will strive to afford the latest genetic "improvements" for their children.
According to the advocates of this human future (or, as some term it, "post-human" future), the exercise of consumer preferences for offspring options will be the prelude to a grand achievement: the technological control of human evolution.
My first close encounter with this techno-eugenic enthusiasm was in a 1997 book written for an unconverted lay audience by Princeton geneticist Lee M. Silver. In 'Remaking Eden: Cloning and Beyond in a Brave New World' (New York: Avon Books), Silver spins out scenarios of a future in which affluent parents are as likely to arrange genetic enhancements for their children as to send them to private school.
Silver confidently predicts that upscale baby-making will soon take place in fertility clinics, where prospective parents will undergo an IVF procedure to create an embryo, then select the physical, cognitive, and behavioral traits they desire for their child-to-be. Technicians will insert the genes said to produce those traits into the embryo, and implant the embryo in the mother's womb. Nine months later, a designer baby will be born. After a few centuries of these practices, Silver believes, humanity will bifurcate into genetic ubermenschen and untermenschen--and not long thereafter into different species. Here is Silver's prediction for the year 2350:
"The GenRich -who account for 10 percent of the American population - all carry synthetic genes. Genes that were created in the laboratory....The GenRich are a modern-day hereditary class of genetic aristocrats....All aspects of the economy, the media, the entertainment industry, and the knowledge industry are controlled by members of the GenRich class."
How do the other 90 percent live? Silver is quite blunt on this point as well: "Naturals work as low-paid service providers or as laborers."
That rich and poor already live in biologically disparate worlds can be argued on the basis of any number of statistical measures: life expectancy, infant mortality, access to health care. Of course, medical resources and social priorities could be assigned to narrowing those gaps. But if Silver
and his cohort of designer-baby advocates have their way, precious medical talent and funds will be devoted instead to a technically dubious project whose success will be measured by the extent to which it can inscribe inequality onto the human genome. Silver pushes his vision still further:
"[A]s time passes,...the GenRich class and the Natural class will become the GenRich humans and the Natural humans--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."
Silver understands that such scenarios are disconcerting. He counsels realism. In other words, he celebrates the free reign of the market and perpetuates the myth that private choices have no public consequences:
"Anyone who accepts the right of affluent parents to provide their children with an expensive private school education cannot use `unfairness' as a reason for rejecting the use of reprogenetic technologies....There is no doubt about it...whether we like it or not, the global marketplace will reign supreme."
When I first read Silver's book, I imagined that these sorts of bizarre prognostications must be the musings of a lab researcher indulging in mad-scientist mode. I soon learned differently. They are not ravings from the margins of modern science, but emanations from its prestigious and respected core. Silver vividly and accurately represents a technical and political agenda for the human future that is shared by a disturbing number of Nobel laureate scientists, biotech entrepreneurs, social theorists, bioethicists, and journalists.
Since the late 1990s, this loose alliance has been publicly and energetically promoting the genetic technology known as "human germline engineering"- modifying the genes passed to our children by manipulating embryos at their earliest stages of development. Such genetic modifications would be
replicated in all subsequent generations, providing supporters with the basis to claim that "we" are on the brink of "seizing control of human evolution."
Frank about their commitments to control and "enhancement," advocates of human germline engineering claim that the voluntary parental participation they foresee refutes any characterization of their project as "eugenic." With public conferences, popular books, scholarly articles, websites, and mainstream media appearances, they are waging an all-out campaign to win public acceptance of their techno-eugenic vision.
The promoters of a designer-baby future believe that the new human genetic and reproductive technologies are both inevitable and a boon to humanity. They exuberantly describe near-term genetic manipulations within a generation that may increase resistance to diseases, "optimize" height and weight, and boost intelligence.
Further off, but within the lifetimes of today's children, they foresee the ability to adjust personality, design new body forms, extend life expectancy, and endow hyper-intelligence. Some even predict splicing traits from other species into children: In late 1999, for example, an ABC Nightline special on human cloning speculated that genetic engineers would learn to design children with "night vision from an owl" and "supersensitive hearing cloned from a dog."
How plausible are such scenarios? 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.
Promoting a future of genetically engineered inequality legitimizes the vast existing injustices that are socially arranged and enforced. Marketing the ability to specify our children's appearance and abilities encourages a grotesque consumerist mentality toward children and all human life.
Fostering the notion that only a "perfect baby" is worthy of life threatens our solidarity with and support for people with disabilities, and perpetuates standards of perfection set by a market system that caters to political, economic, and cultural elites. Channeling hopes for human betterment into
preoccupation with genetic fixes shrinks our already withered commitments to improving social conditions and enriching cultural and community life.
Germline engineering is now common in laboratory animals, though it remains at best an imprecise technology, requiring hundreds of attempts before a viable engineered animal is produced. Human germline manipulation has not been attempted: The only kind of human genetic procedures currently practiced involve efforts to "fix" or substitute for the genes of somatic (body) cells in people with health problems that in some way reflect the functions of genes.
In about five hundred "gene therapy" clinical trials since the early 1990s, doctors have tried to introduce genetic modifications to patients' lungs, nerves, muscles, and other tissues. These efforts have been largely unsuccessful. In late 1999, their safety was also called starkly into question by the death of an 18-year-old enrolled in a clinical trial, and by ensuing revelations of almost 700 other "serious adverse effects" that researchers and doctors had somehow failed to report to the proper regulatory authorities. Some observers have commented that gene therapy would more accurately be called "genetic experiments on human subjects."
Many people are reluctant to oppose human germline engineering because they believe that "genetics" will deliver medical cures or treatments. But there is no reason that we cannot forgo germline engineering and still support other genetic technologies that do in fact hold promising medical potential. In fact, the medical justifications for human germline engineering are strained, while its ethical and political risks are profound.
Fortunately, the distinction between human germline engineering and other genetic technologies (including somatic genetic engineering) is a reasonably clear technical demarcation. In many countries, this demarcation is being drawn as law. Legislation that would ban human germline engineering and reproductive cloning is making its way through the Canadian parliament.
Germany's Embryo Protection Act of 1990 makes human cloning and germline engineering criminal acts, and the Japanese legislature is considering establishing prison terms for human cloning.
A number of other European countries forbid cloning and germline engineering indirectly by outlawing non-therapeutic research on human embryos. Twenty-two European countries
have signed a Council of Europe bioethics convention that includes similar restrictions. In the United States, however, neither federal law nor policy forbids human germline engineering or cloning, though federal funds cannot be used for any kinds of human cloning experiments.
In order to bring the new human genetic technologies under social governance, strong political pressure and a broad social movement will be necessary. Though no such movement currently exists, efforts to alert and engage a variety of constituencies are getting underway.
The movement that this work aims to catalyze will need to draw in a wide range of constituencies, and encompass a variety of motivations. Some participants will base their opposition to a techno-eugenic future on their commitments to equality and justice, and to human improvement through social change rather than technical fix. Others will be moved by the threats to human dignity and human rights, and the horror of treating children as custom-made commodities, that germline engineering and cloning entail. Still others will find their primary inspiration in the precautionary principle, or their wariness of techno-scientific hubris and a reductionist world view, or their objections to corporate ownership of life at the molecular level, or their skepticism about the drastic technological manipulation of the natural world.
It will be far easier to prevent a techno-eugenic future if we act before human germline manipulation develops further, either as technology or ideology. This is a crucial juncture: a window that the campaign for human germline engineering is trying to slam shut. Your participation is urgently needed.
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(A longer version of this article is forthcoming as "The Case Against Designer Babies: The Politics of Genetic Enhancement," in Brian Tokar, ed. Redesigning Life? The Worldwide Challenge to Genetic Engineering, Zed Books.)