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Genetic breakthrough elicits ethical alarm

NCR Staff

The announcement that scientists had finished mapping more than 90 percent of the human genetic code was greeted with caution by bioethicists, who said that, though the knowledge may lead to important medical breakthroughs, society is unprepared to deal with its ethical implications.

The mapping of the human genome “is one of those moments of absolute brilliance,” said Thomas A. Shannon, professor of religion and social ethics at Worcester Polytechnic Institute in Worcester, Mass. “The problem is, we do all the acting before we do any thinking. The cat’s out of the bag now. The information is sitting there. Now we have to figure out ways to deal with it after the fact.”

On June 26, the publicly funded Human Genome Project and the private Celera Genomics announced in a White House press briefing that they had completed a “rough draft” -- a 97 percent-completed map -- of the human genome, all the DNA strands in the 46 chromosomes found in human cells. The mapping was hailed as a revolutionary discovery that will lead to new ways to prevent, diagnose and treat disease. (See special report on genetics, NCR, Oct. 22, 1999.)

James J. Walter, professor of theological studies at Loyola Marymount University in Los Angeles, anticipates disappointment when cures are slow in coming from laboratories. “No geneticist says there will be any substantial benefits from this for at least 10 years,” said Walter, who holds an endowed chair in bioethics.

According to Shannon, the first area of application will be prenatal diagnosis, which could identify genetic anomalies that are imperfectly understood or for which there is no cure. “There will be many more kinds of screening tests, but nobody will know what to do with them,” he said. It could be especially problematic with diseases that have a late onset, he said. If a fetus is diagnosed with the gene for Huntington’s disease or for breast cancer, which will not show symptoms until the person is past his or her 20s or 30s, “what is the value of the life in between that?” Shannon asked.

Beyond treatment of disease are applications that could determine a child’s intelligence, physical appearance and personality -- genetic engineering to make a “better” human being. Referring to the Supreme Court’s recent ruling against a Nebraska law outlawing partial-birth abortion, Walter said, “We can’t agree in this society what a person is. How can we agree what a better person is?”

Cathleen Kaveny, a theologian from the University of Notre Dame, said she fears that society’s commitment to the equal dignity of all persons could erode. “There is a danger that more people will begin to think about their children as their products,” she said. “Perhaps children will begin to think of themselves that way. I think this is an area where religious thinkers have a lot to contribute. For Catholics, what, exactly, does it mean to say all persons are made in the image and likeness of God?”

Society must also consider the effects of gene alteration on future generations, Walter said. If genes are altered at the root -- in the sperm and egg, or germ cells -- there is the potential to alter what the nature of a human being is, he said.

Shannon emphasized that genetic information is by its very nature social: “When I find out information about myself, I also find out about my siblings. They may not want to know. I learn about my ancestors and my descendents. It affects how we think about privacy and individual decision-making. We haven’t begun to process that.”

All three bioethicists said that the genome mapping brings up critical questions about availability of health care in the United States. With over 75 million Americans uninsured or underinsured, “already people find it difficult to get health care,” Walter said. “The new technologies will be very expensive and available only to people who have money or insurance.”

Shannon said the genome project “commits us to the status quo of contemporary American medicine,” which focuses on expensive, high-tech rescue medicine. Debate is needed on the ethics of medical practice, he said. “Do we focus on preventative medicine for a vast majority of people, or on high-tech rescue medicine for a small group of people?”

Kaveny said genome mapping should give “added urgency” to improving health care. “It’s not just a matter of patching the existing system to insure that insurance companies can’t require genetic testing and exclude those with genetic predispositions to diseases,” she said. “It’s a matter of moving away from the insurance model as a whole.”

The question of access has global implications as well, Walter said, noting that as private companies such as Celera Genomics move to patent the sequencing of genes, we need to ask if potential cures will be available to poor countries. “Will we make it private and entrepreneurial or see it as the common heritage of humanity?” he said.

Teresa Malcolm may be reached at tmalcolm@natcath.org

National Catholic Reporter, July 14, 2000