Scientists at the body heading the United States' part of the project, located at the National Human Genome Research Institute of the National Institutes of Health, immediately announced plans for new research into the role that genes play in race and ethnicity; in personality traits and behaviors, and in other aspects of the human condition.
The sequence of the human genome, fruit of work by 16 laboratories around the world, provides the exact order of virtually all 3 billion letters of the human genetic code. This new version completes and corrects errors in a previous draft finished in 2000. The announcement coincided with the 50th anniversary of the publication by James Watson and Francis Crick of the three-dimensional structure of DNA.
Information from the project is already proving its usefulness, reported the British daily Guardian on April 14. "Just one part of the work -- the sequencing of chromosome 20 -- has already accelerated the search for genes involved in diabetes, leukemia and childhood eczema," said Allan Bradley, director of Britain's Sanger Institute, where a part of the research on the genome was done.
Bad science, in a kit
Genetic research has already spawned new problems, however. Kits promising to inform people of their genetic defects have flourished in the United States and are increasingly popular in Britain, according to the London-based Observer on Jan. 19. Dubbed "health horoscopes," they claim to be able to predict with certainty what illnesses a person will likely contract, by revealing inherited traits.
"This is dangerous," warns Dr. Hugh Montgomery, senior lecturer in genetics at University College London. "It is bad science and a bad idea. We simply do not have enough information to link major risks to some of these genes. The situation is much more complex and we simply don't know how some of these genes interact."
Similarly, a Feb. 11 article in the New York Times warned that the tests put us in danger of "slipping, as Francis Fukuyama puts it, toward 'our post-human future,' without public understanding or debate, and without adequate laws to prevent genetic discrimination."
In Britain, Sir Paul Nurse, a Nobel Prize winner and chief executive of the charity Cancer Research, noted that advances in genetics are expected to open up an era of personalized medicine and preventive treatments. Yet, he warned, they could also lead to discrimination by insurance companies and employers against people with genetic defects, Reuters reported March 3.
"This issue is too important to be left to scientists and policy-makers alone," Nurse told a meeting sponsored by the Royal Society, Britain's academy of scientists. "In the coming years, the public will be offered more and more opportunities to take genetic tests and peer into their genetic destinies, but legislation must keep pace with the technology and help shape a fair and equitable society."
Ethical concerns apparently are already being overlooked in the rush to commercialize genetic testing. According to the Boston Globe on March 26, Myrian Genetics spent $3 million last fall and winter advertising tests for susceptibility to breast and ovarian cancer. Ads were aimed at women in Denver and Atlanta.
"The risks of this type of advertising will far outweigh the benefits for the average person," warned Ellen Matloff, director of cancer genetic counseling at the Yale Medical School's cancer center in New Haven, Connecticut. "It will unnecessarily frighten a large number of women who will then flood their doctors with requests for unnecessary tests."
Only 5% to 10% of breast cancer cases are caused by genetic factors, noted the Boston Globe. And most women who develop the disease do not have the mutations that the test searches for.
Responding to concerns over genetic tests, the British government announced that they should not normally be sold directly to the public, the London Times reported April 10. A report by the Human Genetics Commission said that direct sales of such tests raised serious questions, and urged that a "robust but flexible" regulatory system be established to control them.
The commission recommended that companies wanting to market tests directly to the public should have to convince a regulator of their value. And those marketing the tests should have training and expertise to provide good advice.
Not offending the gods
Another issue is whether scientists should seek to alter genetic structures to "improve" the human race. One of those who discovered the DNA structure, James Watson, is decidedly in favor of such action, the London Times reported April 24.
Watson, currently president of Cold Spring Harbor Laboratory in New York state, said that spurious objections from left-wing and religious groups were slowing the pace of the medical advances that rely on genetics. "I think you should be able to do all you can to improve human life," he said.
Addressing a gala dinner at London Guildhall, Watson commented: "I don't see genetics as offending the gods, as I don't think there are any gods out there." The Times also noted that Watson recently opposed a ban on human reproductive cloning.
Others are pointing out the dangers of tampering with human genetic structures. In an April 14 essay for the Los Angeles Times, Bill McKibbon, author of "Enough: Staying Human in an Engineered Age," welcomed the celebrations of the anniversary of the DNA discovery.
But he warned that "the latest plans of Watson and his followers are monstrous." Such schemes "look forward to a world of catalog children, who might spend their entire lives wondering which of their impulses are real and which the product of embryonic intervention. They replace the fate and the free will that always have been at the center of human meaning with a kind of genetic predestination that will leave our children as semi-robots."
He added: "A species smart enough to discover the double helix should be wise enough to leave it more or less alone."
Dr. Leon Kass is also wary of the trend toward genetic consumerism. Kass, chairman of the President's Council on Bioethics, addressed the issue in an essay in his recent book, "Life, Liberty and the Defense of Dignity: The Challenge for Bioethics."
Genetic technology, he observed, "comes into existence as part of the large humanitarian project to cure disease, prolong life and alleviate suffering. As such, it occupies the moral high ground of compassionate healing."
But this same technology, he noted, "also represents something radically new and disquieting." We should reject the attempts by some scientists to cast the debate about genetic technology as "a battle of beneficial and knowledgeable cleverness against ignorant and superstitious anxiety."
Genetic manipulation, Kass explained, is decisively different from other medical technologies. First, changes to human genetic structures will be transmissible into succeeding generations. Second, genetic engineering may be able to create or improve human capacities and therefore new norms of fitness and health.
Moreover, genetic technology and the practices it will engender are not morally and humanly neutral, Kass warned. Scientists will end up judging other beings' worthiness to live or die based on genetic information. And the temptation to produce designer babies will bring about the commodification of nascent human life.
Kass concluded by warning that the infatuation for scientific progress carries the risk of triumphing over nature's unpredictability, "only to subject ourselves, tragically, to the still greater unpredictability of our capricious wills and our fickle opinions." Science may have settled one problem, only to create another.