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Posted 7-1-98
Recent advances in genetic technologies offer great promise for enhancing human well-being in a variety of ways -- everything from preventing and curing rare diseases to selecting a child's physical and personality traits.
But there is a catch. Genetic technologies are very expensive, so their benefits may only be available to the wealthy. That could produce a nation of genetic haves and have-nots, and threaten the foundations of democratic society.
The opportunity and dangers posed by differing access to genetic technologies is the subject of a new book co-authored by Maxwell J. Mehlman, the Arthur E. Petersilge professor of law and director of the CWRU Law-Medicine Center.
The book, Access to the Genome: The Challenge to Equality, explores some of the recent, dramatic developments in genetics and their implications for humans. A grant from the National Institutes of Health's Office of Human Genome Research funded the book.
Mehlman and co-author Jeffrey R. Botkin -- associate professor of pediatrics and medical ethics at the University of Utah (formerly on the faculty of the CWRU School of Medicine) -- begin with a brief explanation of DNA, genes, and chromosomes, and how they work to shape human heredity. The authors describe the Human Genome Project, the 15-year effort to "map" the location and function of the billions of pairs of genes which make up the human genome.
The book explores some of the practical applications of human genetic technology. Among these are diagnosing certain kinds of diseases (genetic screening and testing), inserting genetic material into a patient for therapeutic purposes (gene therapy), and manipulating genes to produce certain desired physical characteristics or abilities (genetic enhancement).
The final chapters are devoted to issues of access to these technologies, which will likely be based on the ability to pay for them; the political and social implications of unequal access to them; and possible ways to offset the problems caused by unequal access.
Mehlman first approached NIH in the early 1990s with the idea for the book. "I've long been concerned with issues of distributive justice," he explains.
"When the Human Genome Project began, and the NIH was started to stimulate scholarly work on its ethical and social implications, I noticed that most of the work being done was looking at the adverse consequences of genetic technologies. No one was looking at the fact that these technologies were likely to provide enormous benefits as well, but only to those who can afford them."
Of course, for as long as humans have lived together in societies, there have been people with more wealth and power than others, and they have sought to pass on these advantages to their children. But the issues posed by access to genetic technologies are of a different order, Mehlman believes.
The fact that only the wealthy may be able to fully exploit the benefits of gene therapies could produce a society in which some people are genetically "healthy," and others are not, with disturbing overtones of eugenics.
Even more frightening, says Mehlman, is the prospect of selective access to genetic enhancement technologies. "The wealthy, who already have privileged status by virtue of their wealth, will add to that a set of potentially powerful genetic advantages, and you get what I call a "genobility.' And the question arises, what does that mean for Western democratic political systems?"
One scenario Mehlman and Botkin envision is that the new "genobility" will have so much wealth and power, combined with the ability to genetically enhance their offspring, "that it will undermine the equality of opportunity that is really the foundation of Western liberal society. And what we will have instead is either more of an aristocratic, feudal kind of society in which those people basically call the shots, or a bitter, ongoing struggle between those with privileges and the rest of us. In either case, it's not a pretty picture."
Mehlman and Botkin end their book by exploring possible solutions to the problems stemming from unequal access to genetic technologies. One possibility is simply to ban further research in genetics. However, Mehlman points out, much of the current research is aimed at prevention and cure of previously incurable ailments, something that few would wish to stop.
"The problem is, if we don't ban that, it will be difficult to stop people from getting genetic enhancement," Mehlman explains. "Because of the way genetic science works, it's hard for a researcher to say, 'I'm only going to look for genes that cause disease. If I happen to see a gene that correlates with perfect pitch, I'm going to suppress that knowledge.' That's unrealistic."
To ensure that everyone will have at least some possibility of accessing genetic technologies, Mehlman and Botkin propose a national lottery, with the prize being a package of whatever genetic procedures or enhancements are commercially available at the time.
Precedents for this kind of distribution already exist, Mehlman points out. For example, several years ago the state hospital system in Pennsylvania established a lottery program for distributing a drug used to treat schizophrenia. And protease inhibitors, used to treat individuals with AIDS, were distributed by lottery when they were first developed.
The wealthy would still be able to purchase as many genetic services as they wish, Mehlman says, "but at least it keeps alive the spirit of equal opportunity which is so important in this society."
The authors concede that many people are skeptical whether the problems discussed in the book will ever come to pass. One group of skeptics maintains that highly sophisticated genetic technologies are little more than science fiction and will never occur. But those critics have been less vocal since Dolly the sheep was cloned last year.
Others maintain that Mehlman and Botkin overemphasize the importance of genetics in shaping human personality, a continuation of the ancient "nature versus nurture" debate.
"We acknowledge that risk, and we certainly don't want to ignore the environmental and societal forces that shape people." Mehlman responds. "On the other hand, it's naive to ignore the genetic side. Just as the medical revolution of the 20th century was antibiotics and the germ theory of disease, so the 21st century is going to be the century of genetic medicine. To deny that is to put your head in the sand."
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