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 group, s.
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 Patens 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 flesh 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."
Copyright 2001 by Team C0123260
The Legenders , RJC, Singapore