Designer babies, anyone?

Issue: Oct 22, 1999(National Catholic Reporter)

Engineered genes -- a way to avoid defects, select strengths

As anyone who keeps up with breaking news already knows, recent experiments in genetic manipulation have enhanced intelligence of mice, enabling them to more easily navigate mazes and remember what they learned.

Alert householders have not missed the implications. If such engineered mice escape and reproduce, it has been duly noted, the nuisance factor in homes will zoom.

Not to worry. Scientists have also found a way to change the mouse's personality. That aloof little creature noted for its sneak attacks can be transformed into a more agreeable and sociable kitchen visitor simply by injecting it with the genes of cuddly prairie voles.

If only, some readers are surely thinking, someone could do that with our co-workers and kids.

And that's where the future comes in.

Fast forward to the year 2050 when, Princeton University biologist Lee M. Silver predicts, a partnership between biotechnology and computers, known as "bioinformatics," may allow parents to assess genetic profiles of hundreds of embryos containing their genes and decide which one will become their child. Profiling will allow them not only to role out predisposition to serious diseases, but also to select physical characteristics, special abilities and personal attributes.

Possibly further down the road but almost sure to come, experts will be able to actually alter genes to produce designer children in conformity to specific parental desires.

More and more in the late 20th century, such scenarios, once the province of futuristic fiction, are looking not just possible, but likely. Ethicists, opponents of abortion, and even some scientists are beginning to sound alarms about the medical, social and moral consequences as scientists work feverishly toward genetic treatments for disease, with the prospect of genetic "enhancements" not far behind.

Jeremy Rifkin, author of The Biotech Century and one of the most vocal critics of biotechnology, warns that a huge life sciences industry "is already beginning to wield unprecedented power over the vast biological resources of the planet." In the next century, he predicts, eugenics -- once the province of elitists and political demagogues -- will be repackaged and promoted as "consumer options."

Lee M. Silver, a biologist and author who lectures widely on the social impact of biotechnology, predicts that production of children to conform to genetic profiles could be an available technology by the middle of the next century.

Alongside some "truly wonderful medical advances," genetic therapies for some of the 20th century's most insidious and intractable diseases, we may end up "cell by cell ... surrendering our humanity to the marketplace, bartering ourselves away one gene at a time in pursuit of our own engineered perfection."

Genes are big business

Genes are, quite simply, big business. "Clearly, much more money is riding on the new genetics than was the case with traditional biomedical research," wrote Thomas A. Shannon, Catholic theologian, in his new book Made in Whose Image. Shannon teaches at Worcester Polytechnic Institute in Worcester, Mass.

Further, much of it is private money, driving research that is unfettered by public controls.

Lisa Sowle Cahill, a theologian at Boston College, points out that news about biotechnology often breaks in the business pages, a reflection of the way the public views the research. The direct effects on human lives "seem distant to a lot of people," she said. "They don't see how they can be harmed. Their main concern is should we invest in this? They don't see the other side of it."

Just as in vitro fertilization -- developed as a treatment for infertility -- paved the way for genetic manipulation, the first efforts in genetic manipulation are likely to be aimed at healing rather than at producing designer kids. Scientists working on the Human Genome Project expect to complete the mapping of some 100,000 human genes (or possibly 140,000 according to a news report released late in September) on 23 pairs of human chromosomes by early in the next century, revealing the root causes of many diseases. Isolating some 2,000 to 5,000 genes currently thought to either cause or predispose human beings to disease is, scientists say, the first step in the hard work of finding genetic cures. As an example of current time lags between discoveries and medical applications, no cure is yet available for cystic fibrosis, though biologist Francis Collins discovered its sources in a genetic flaw nearly 10 years ago.

Distinctions basic to any discussion of what lies ahead are those between somatic genetic therapies, germ line genetic interventions and stem cell research.

Somatic gene therapy (from soma, for body), the least controversial of the three procedures, though still in experimental stages, involves inserting normal genes or DNA fragments into body cells in an effort to correct a genetic defect that is producing disease or may become disease producing. The therapy, limited to a given individual, enjoys wide public support -- as much as 83 percent according to one recent poll.

Germ line interventions, whether for therapy or enhancement (such as to heighten intelligence, or make a person taller) are directed at the germ, or reproductive cells. Germ line alterations are far more controversial than somatic therapies because of their inevitable and possibly unpredictable effects on future generations who are unable to give their consent. Some scientists think the process, which alters the fertilized egg, may never be free enough of risk to ever be wisely used. As the egg divides, genetic modifications become permanently encoded in the cells, including the reproductive cells, of the new organism.

Among somatic gene therapies under development, researchers announced in late August that they had achieved permanent correction of a diseased gene for the first time, leading toward cure of Crygler Najjar syndrome. The disease afflicts children, particularly Amish children, with fatal brain damage. Success with that procedure has implications for curing other disorders from inhered single-gene defects, such as hemophilia and sickle cell anemia. Then, in September, scientists performed an experimental genetic therapy on a 36-year-old man with muscular dystrophy, a progressive, often fatal, muscle-wasting disease. Researchers injected genes into the man's foot hoping they would supply a muscle protein that's missing because of a genetic flaw.

Genetic cures for diseases associated with multiple genes, such as various forms of cancer, are more complex, but researchers are working on stopgaps: drugs that block disease-producing messages generated by defective genes, and animals with human genes as a source of organs for transplant into humans.

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