By Lisa Seachrist
WASHINGTON—President Clinton called the 21st Century the era of biology when he presented his budget to Congress this year. Few would argue with him as genetic technology promises to offer a means for attacking inherited diseases at their source.
Nevertheless, since its inception, genetic technology has engendered a certain level of anxiety as people have envisioned made-to-order babies and genetic enhancements for the rich as well as the elimination of traits considered undesirable for whatever reason. In more recent times, the public discourse has run toward protecting people from job and health insurance discrimination and to preventing the cloning of humans.
With a technology that can cause so much public apprehension, the American Enterprise Institute, a conservative think tank, sponsored a conference discussing the moral boundaries of genetic technology.
"Occupying the moral high ground of compassionate healing, biomedical technology usually receives a royal welcome in our society, even when it raises challenges to other traditional moral norms," said Leon Kass, professor of social thought at the University of Chicago and an adjunct scholar with the American Enterprise Institute.
"The public is right to be ambivalent about genetic technology," he said, "and no amount of learning molecular biology and genetics is going to allay our legitimate human concerns."
Science's Implications Staggering
Kass maintained that genetic technology is different from ordinary medical practice because it will allow humans to make changes in the germline that can be transmitted to succeeding generations either through germ cell gene therapy or embryo modifications, and it offers the opportunity to create new capacities by enhancing current human physical, intellectual, and creative abilities.
"Gene therapy will not be confined to treating disease in existing individuals," Kass said. "And the line between somatic and germline treatment will not hold."
Kass also questioned how much genetic information is good for society, arguing that knowledge of the predisposition for developing disease could alter our choices or cause distress when there is no preventative or treatment for a particular disease, such as Alzheimer's.
"Does this mean I am in favor of ignorance, suffering and death? Am I in favor of killing the goose of genetic technology even before she lays her golden eggs? Surely not," Kass said. "But I do insist on the importance of seeing the full human meaning of this new enterprise in biogenetic technology and engineering."
Deciding exactly what limits to set on technology, however, is difficult, said Daniel Callahan, director of international programs and senior associate for health policy at the Hastings Center.
"Part of the problem with a society addicted to scientific progress is that we can hypothesize harms but we simply can't make a very convincing case that the potential harms are enough to impose limits to a technology," Callahan said.
In addition, many people in American society believe people should be able to make their own choices.
"It's all the more difficult when people believe the setting of limits is a harm in and of itself," Callahan noted. "People think that if we begin setting limits, soon there will be no way to stop the intrusion of limits on technological progress."
Callahan noted the U.S.' market-based society makes it hard to stop a technology if it is likely to be profitable. "I don't believe we would be having the debate over genetic technologies if there weren't money to be made," he said.
Finally, the desire to relieve suffering and improve health serves as a strong motivation to pursue genetic technology at any moral cost.
"I am struck by the fact that no matter how much our health is improved in this country, it is never enough," Callahan said. "As our life expectancy and overall health have steadily improved, our sense of being healthy has grown much worse. It is as if we are unwilling to accept any suffering at all."
Nevertheless, some have argued society has no right to prevent a person from using a technology if it could cure a disease like cancer or infertility simply because a percentage or even a majority of the population considers the procedure unethical or immoral.
Callahan said every society makes a collective judgment about moral wrongs. Otherwise, the consequences of living together would be much pain and suffering.
"If you are genuinely fearful of harmful consequences," Callahan asserted, "you have to be willing to say that some potential good will be forgone. The idea that society can't prohibit someone from doing something is ridiculous — that is what societies do."
Regulatory Bans Not Favored
However, Callahan would prefer to see genetic enhancements, cloning and germline gene therapy limited not by legislative bans, but by a commitment to societal norms.
"Our society has made racial epithets taboo," Callahan said. "That doesn't mean that they don't happen, but there is [enough] social pressure against them that they will never be part of the normal discourse in this country. In the same way, I'd like to see society generate enough repugnance at things like cloning that there will be a general aversion to such endeavors."
Nelson Wivel, deputy director of the Institute for Human Gene Therapy at the University of Pennsylvania School of Medicine, in Philadelphia, proposed that the technology itself may provide the necessary limits.
"We are having a lot of difficulty treating single gene diseases," Wivel noted. "There is not one scintilla of efficacy of any protocol to this point. How are we going to manipulate polygenic traits like intelligence and personality."
Wivel said attempts to prevent genetic enhancements will fail under the current regulatory framework because most gene therapies will be approved to treat disease, and at that point physicians will be able to use the therapy for whatever off-label purpose they choose.
Nevertheless, Wivel sees a strong likelihood that germline therapy will be avoided because it would affect future generations who could not consent to the risks of the procedure. For example, one may be able to cure a genetic disease by germline gene therapy, but it would be impossible to know if that therapy would cause other genetic problems until children were born. He also noted selective abortion negates the need for germline therapy.
"It is a brave new world. But the strength of a participatory democracy is the ability to have discussion just like this," Wivel said. "We need a continual public forum and discussion to sort out these issues." *