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Biotechnology and Freedom

Access to Genetic Experimentation Must Not Be Restricted

Kris Schnee

We can expect some amazing advances in medicine in the next few decades, brought on by the completion of the Human Genome Project. We will be able to live longer, healthier lives thanks to today’s cutting-edge genetic research. But what shall we do with our knowledge once we have it? There are many possible applications of genetic engineering which go beyond curing cancer into completely uncharted ethical waters. Our society needs to consider every possibility and decide how to legally and socially deal with genetics so that we will be prepared for the new ethical issues which may arise. And the best way to use the new technology, we may find, is to protect the freedom of everyone to use or avoid it.

The main challenge of genetics in the next few decades will be to understand, not just read, genes. Computer models and chemistry can help us learn how the proteins DNA creates interact with other molecules. But we also need raw data to learn which gene does what - data we may have trouble getting.

Recently, the parliament of Iceland voted to grant a license to the company deCODE to develop a genetic database of the island’s 270,000 inhabitants. Icelanders are a treasure trove for geneticists -- as a very homogenous population with excellent genealogical records, they will make it easier to link specific genes to specific illnesses and other characteristics. Understandably, the rest of the world is uneasy about deCODE’s venture -- will we be guinea pigs next? How can we stop researchers from reading our own genes without our consent?

The answer is plain -- use democracy. deCODE was wise to get (a kind of) legal consent from its “subjects.” If we insist on the long-held medical ethic that “informed consent” is necessary for any physical experimentation on humans, and extend it into a law covering the realm of genetics, then we will be protected from large, coercive studies. By using only the rule of consent, we also keep the benefit of freedom. We can still choose to participate in studies which may someday save lives, as long as the individual always has the right to “opt out.”

At first, knowing and understanding the human genome will only allow us to read -- to see what genes a person has -- but we will then learn to write. We already have the beginnings of this technology -- a technique has been developed which allows couples to choose the sex of their baby before conception. This method is fairly reliable already, and can only improve with time. Now what if, with more sophisticated chemical or laser analysis, we could see the genes of an individual sex cell or a week-old embryo in a lab? It would be possible to select a few particular cells which, through natural shuffling, have the parents’ “good” alleles and not the “bad” copies. The result would be a perfectly normal child with the best genes the parents have to offer!

Take the idea one step farther. It is difficult to add or replace genes in mammals, but it can be done. There have been some success with the process already, at several places in Cambridge. We could find a set of desirable, “healthy” alleles and apply them to any parents’ genes, giving everyone’s children the gifts which are not in the parents’ own genes -- the best genes the human race has to offer -- while still making every baby the genetic descendant of its own parents.

But who should have access to this amazing technology? Some will argue that it is wrong to go beyond correcting medical problems -- that a line is crossed when we offer not just to fix a predisposition to dyslexia, but to make “improvements” such as raising a child’s potential reading skill. Many will accept the existence of genetic engineering only under strict government supervision. We should, they will argue, allow parents to use screening and gene alteration to prevent major diseases, but forbid it for superficial purposes like choosing childrens’ appearance or athletic skill, and certainly not for intelligence. These changes might destroy the thrill of learning about one’s own child; the children will have no control over which genes their parents choose for them; parents might place unreasonable expectations on their children to be “the best and brightest.”

But these concerns do not justify draconian legal control of genetics. Parents will still love their children no matter what, and children never have had control over their own genes. It is better for everyone that benevolent parents be allowed to decide what genes children will have rather than forcing parents to rely on chance. Parents will generally try to make their children as healthy, strong, and smart as possible; what is wrong with that?

One of the strangest possible future applications of genetic engineering is the creation of hybrid, “transgenic” organisms. Scientists recently caused public alarm by announcing that they had fused a human cell nucleus with a DNA-less cow egg cell, making a newly “youthful” human cell. While this cross-species experiment probably could not develop into a living being -- cows’ energy producers, mitochondria, are incompatible with ours -- it understandably frightens some. Some people think that irresponsible scientists will make a Minotaur or something similar. In fact, author Jeremy Rifkin claims that “a human chimpanzee can be accomplished tomorrow morning, if anyone wants to do it.” Rifkin wants to take out a patent on the concept of hybrid animals, so that he can prevent their creation altogether.

Are Rifkin’s fears justified? Chimpanzees, our closest living relatives, have DNA which is said to be over 98 percent identical to ours. In that under-two-percent is everything that makes us taller and less hairy, and our brains more sophisticated than theirs. Furthermore, the differences between the species are (supposedly) largely in contiguous sections, making the changes relatively easy to spot. While Rifkin’s “tomorrow” is an exaggeration, it’s plausible that if we find out which genes make our brains different (no easy task), and replace the chimp-brain genes with human-brain ones, we will get a chimpanzee capable of speaking fluent sign language, performing Shakespeare, discussing Darwin -- a conscious “animal.”

Imagine how enriched our society would be by an entirely new kind of intelligent life. Chimps, or other “animals”, would add new ideas and perspectives to our own. Of course, the very idea will elicit howls of protest from some people -- demands that we immediately ban any attempts to research the subject. But if a team of scientists wants to try creating “a human chimpanzee” or something similar, why should they not be allowed to do so? They are certainly not hurting anyone, as long as they show concern for their creations. If an animal ever appears with an intelligence level even close to human, it will presumably be entitled to life and liberty, and should be shown the same compassion as a human, not hatred and fear for being a “monster.”

We do not know whether advanced genetic engineering will, like submarines and space flight, change from fiction to reality, especially within our lifetimes. We may soon have the ability to improve our children with genetic engineering, and even to experiment with the nature of life itself. Who should control the technology?

The issue is one of freedom. Whatever the future of genetic research may be, the best solution to the problem of controlling it is to give everyone its power, to use or ignore at their discretion. If one couple wants to have genetically engineered children, and another would only have “natural” children, then let both sides do what they think is right, and not try to force their views on each other. We do not know what benefits the study of DNA will bring us, or when we will have them. But we should not let any group of people, however well-meaning, dictate that this technology is forbidden. Genetic engineering’s use is a difficult moral decision best left up to the individual; to restrict it would be just as oppressive as to force people to use it.

We should remember that ignoring the possible dilemmas surrounding genes, culture, and humanity is not an option. As Senator Tom Harkin once said of the new science, “What nonsense... to think that we can hold up our hands and say, ‘Stop.’” We need to be ready for such issues whenever they come up, to deal with them fairly while preserving freedom.