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Special Section - Human Destiny

Designer babies, anyone?


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 rule 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.

In July, three medical institutions in Houston announced that they were creating a $30 million cell-and-gene therapy and research center aimed at revolutionizing therapy for illnesses ranging from cancer and AIDS to cardiovascular disease and diabetes, and eventually diseases that affect the central nervous system, such as Parkinson’s and multiple sclerosis.

Leaders at the center said that they expected few giant breakthroughs but rather steady progress that would justify the hype surrounding genetic research.

Undoubtedly, though, more setbacks will be part of the picture, too, like the death in September of an 18-year-old man following a gene therapy trial at the University of Pennsylvania.

Few doubt that genetic cures will come. But knowledge about genetic predispositions and its attendant complications and dangers will come first. There’s a downside to such information that has many ethicists worried. It will alert insurance companies and employers to people who, though they appear healthy, are likely to develop into bad risks. Until cures are found and made affordable, a child who might have been celebrated as robust and healthy had she been born at the turn of the 21st century might be lamented as a potential victim of a still-incurable disease if born 20 years later. New standards of health will apply.

Meanwhile, informed genetic counselors will be badly needed. Yet, ethicists say, churches are ill prepared to provide them.

In a future in which genetic treatments become available at the earliest stages of human development -- or in which problematic embryos are destroyed or donated for research -- will people who do become sick, or even disease-prone people, become victims of discrimination, even more so than they are today, by insurance companies, employers and peers? Disease in such a future would no longer be a problem that cuts across economic lines. Rather, like quality of schools and housing, its presence or absence would be, far more than at present, another criterion that defines economic groups.

As a forerunner of the ambiguity that lies ahead, critics point to the relatively widespread use of a growth hormone. Initially developed as a treatment for dwarfism, a rare condition that afflicts some 7,000 children, critics contend that pharmaceutical companies have created a lucrative market by successfully promoting the drug as a muscle builder and, even more problematically, as a way of adding a couple of inches of height to children whose growth falls within the normal range.

Companies deny that they have inappropriately marketed the drug. Yet, it has been prescribed for some 20,000 children, putting it among the nation’s 50 best-selling drugs. In America, where height is statistically related to success, some ethicists worry that otherwise normal degrees of shortness are subtly being redefined as disease.

The advent of genetically engineered characteristics and talents is almost sure to raise the ante on what parents might reasonably be expected to provide. Music lessons and private schools represent one level of “enhancement”; genetic engineering, proceeding from a socially determined life script, is quite another. Will children be allowed to sue their parents if they don’t like the enhancements their parents chose or if their parents failed to provide enhancements at all?

What lies ahead, ethicists fear, is an increasingly fuzzy line between therapy and enhancement, and a search for medical solutions to social problems. Rifkin predicts that genetics will become “the ultimate consumer playground.” (This process is already evident to some degree with a booming market in cosmetic surgery in the United States as women and men alike pay thousands to rework faces and bodies to some elusive standard of youth and perfection.)

“The easier it is to change our bodies to relieve our suffering, the less inclined we may be to try to change the complex social conditions that produce that suffering,” Eric Parens wrote in Enhancing Human Traits, a collection of essays developed from a two-year project in the social implications of biotechnology at the Hastings Center, a medical ethics research center in Garrison, N.Y. “Wouldn’t it be easier, for instance, to engineer genes to eliminate dark-skinned people than to address the historic patterns of racial discrimination in the United States?” one of the writers wondered. Parens, who edited the book, is associate for philosophical studies at the Hastings Center.

No wonder the race to patent human genes -- another ethical quagmire -- is well underway. In a 1980 ruling that scientists hailed, the U.S. Supreme Court sanctioned patenting genes, widening the road to commercialization. Splitting five to four on the decision, justices said that, under U.S. patent laws, living things are essentially no different from inanimate objects. Rather, the court said, the critical test in awarding patents is whether human invention is involved.

Call for ban on patented genes

In 1995, Rifkin and a coalition of 180 religious leaders from 80 denominations called for a ban on patenting human or animal genes, saying that the process devalues the sanctity of life. “The question of whether life itself is to be regarded as a human invention of God’s creation is one of the seminal issues of the coming age,” Rifkin said in calling for the ban. Biotechnology and drug industries argue that such patents are essential to research leading to genetic therapies for disease.

Thomas Shannon, underscoring religious leaders’ need for better scientific information, pointed out that Rifkin’s statement in its entirety was misinformed and misleading, an unfortunate chapter in a much-needed ethical and religious debate. Such missteps undermine the credibility of religious leaders and risk their place at the table in debates to come, Shannon wrote in Made in Whose Image.

Despite potential problems and abuses, Pope John Paul II has expressed openness to genetic engineering, giving what Catholic theologian James J. Walter of Loyola Marymount University describes as a “yellow light” to research. “He has said that there is nothing in principle wrong with germ line engineering, even with enhancing the human being,” he said.

Specifically, the pope said this in a 1983 address at the Vatican to a convention of the World Medical Association: Genetic manipulation aimed at healing disease is consonant with the Catholic moral tradition and “will be considered in principle as desirable provided that it tends to real promotion of the personal well-being of man, without harming his integrity or worsening his life conditions.” The pope also left the door open to genetic enhancements, urging “moral discernment” and adding some caveats. Among them, the pope said genetic manipulations “must not offer harm to the origin of human life,” and should not “modify the genetic store to create groups of different people, at the risk of provoking fresh marginalizations in society.”

Of course, the Catholic church strongly opposes any research destructive to human embryos and any production of embryos to be used for research. However, procedures intended to be therapeutic can be performed on embryos, including genetic screening and treatments. Further, the Vatican said in its 1987 document Donum Vitae (“Instruction on Respect for Human Life”), procedures and drugs not fully tested can be licit when performed or used on a human embryo “in the absence of other reliable forms of therapy” and “in a final attempt to save its life.”

For the public at large, as well as for theologians and ethicists, the issues are profound. Ronald Cole-Turner, professor of theology and ethics at Pittsburgh Theological Seminary, worries that the debate is too narrow. “To me, at least, it is distressing,” he wrote in Enhancing Human Traits, “that precisely at the moment in human history when we are poised on the threshold of the possibility of the technological manipulation of human nature, we have very little consensus on what we mean by human nature.”

It is here, Shannon believes, that Catholic tradition can play a positive role.

“There is,” he wrote, “an overarching wisdom in the Catholic tradition that argues for the dignity of the person, a suspicion about power and control, and a recognition that physical interventions, whether medical or social, touch a person and not only that person’s body. That wisdom stands independently of any of the specific claims and arguments of the magisterium or of the theologians. Such wisdom needs a hearing.”

National Catholic Reporter, October 22, 1999