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Ethics Issues Stand Out in Relief as Gene Mapping Advances

June 25, 1989|CATHERINE ARNST | Reuters

NEW HAVEN, Conn. — Science fiction has long been filled with chilling scenarios of the future in which evil leaders try to engineer a master race of genetically perfect human beings.

The tools to accomplish such a feat are slowly moving out of the realm of fiction, however, as geneticists around the world struggle to identify and decode all of the genes contained in the human body.

At the same time they must struggle with the ethical questions that have always surrounded the science of genetics, but their efforts in that area may be moot. Scientists at a recent conference on gene mapping frequently pointed out that, once they determine how a human being is made, they will have little control over how their discoveries are used.

"We want to make people literate about genetic knowledge . . . there is no doubt that this knowledge would be very useful," said Dr. James Watson, the Nobel laureate who with Francis Crick discovered the structure of DNA, the basic building block of cells.

But Watson told the Yale University conference that, although he is "genuinely concerned" about how that knowledge is applied, "we cannot make policy . . . all we can do is educate."

Gene mapping is one of the hottest areas of science now, and a unique international effort has been undertaken to locate and define all of the chemical instructions that create a human being, collectively known as the human genome.

Researchers are working to map the position of each of the 100,000 or so genes contained on the body's 46 chromosomes. They must then determine the sequence of a four-letter code contained on the DNA of each gene, known as the genetic code.

This code controls everything from hair color to some aspects of personality and consists of about 3.5 billion characters for the entire genome.

Nearly 2,000 Genes Mapped

So far researchers have mapped just under 2,000 genes. They do not expect to complete the arduous process for another 15 to 20 years.

The United States has announced plans to invest more than $3 billion over the next 15 years in the National Institutes of Health's gene-mapping project, making it the largest in the world.

France also has a well-advanced gene-mapping program. The European Community plans to invest $20 million over the next two years on a genome project. And Japan, the Soviet Union, Italy and Canada have announced plans for national programs.

"It is very clear that the human genome initiative has captured the imagination of the world," said Norton Zinder, chairman of the advisory committee to the NIH's human genome program.

The world, however, is not interested merely for the sake of improving knowledge. Researchers expect that once the genome is defined, medical science can apply the findings to the diagnosis and cure of more than 4,000 human diseases known to stem from gene defects.

Doctors could predict an individual's, or even a fetus's, susceptibility to everything from Alzheimer's disease to cancer, and could possibly alter biological instructions to eliminate genetic defects.

Issues Raised

Consequently, gene mapping raises a host of social and ethical issues, such as rights to privacy raised by genetic testing, the prospects of more abortions to eliminate the "genetically unfit" and whether gene therapy should move from the treatment of a disease to the alteration of a person's genetic makeup to eliminate the possibility of disease.

Many of the 700 scientists who attended the Yale conference were obviously concerned about ethics but also confused as to how much they should be involved in issues generally decided outside the laboratory.

Victor McKusick, director of an international group called the Human Genome Organization (HUGO) that is trying to coordinate gene-mapping research worldwide, said that scientists may think they have no place in setting social policy, but in this area "we have to take (ethics) seriously."

"The truth is we are going to have genetic information," he said. "We must make decisions on how it will be used."

The NIH, under the auspices of Watson and Zinder, have set up a working group on ethical issues connected to the genome project led by Nancy Wexler, an associate professor of clinical neuropsychology at Columbia University and president of the Hereditary Disease Foundation.

The project also plans to spend 3% to 5% of its annual budget, up to $5 million, on ethical concerns and public education.

Opposition to Mapping

But gene mapping is already running into opposition. Jeremy Rifkin, president of the Foundation on Economic Trends and an outspoken opponent of genetic engineering, has organized a coalition of 70 consumer representatives including Ralph Nader and National Organization for Women President Molly Yard to lobby for the creation of a permanent congressional board to "address the issues of genetic discrimination, privacy and eugenics caused by the human gene-mapping project."

In West Germany, the environmentally focused Greens Party is strongly opposed to the genome project, claiming that the research could lead to human eugenic experiments similar to those carried out by the Nazi regime.

However, scientists note that the regulations imposed by individual countries may be meaningless for a project that is so international in scope.

Zinder said the NIH group has been approached by several Third World nations interested in sharing research efforts and results. "I don't know that we can do anything about how they will use it," he said. "We can only provide the information."

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