Scientists thread way through ethical mine field on genetics. As genetic research uncovers the physical makeup of human beings, there is concern over ethical issues. A biomedical ethics expert says society must come to grips with the moral and social implications of gene science before the technology becomes widely available.
For many scientists, a complete map of all of the chemical instructions that govern the human body's development and functions would represent a unique tool for studying those processes. But to Thomas H. Murray, an effort to draw up such a map raises a crucial question: How will society use the knowledge gained from such a tool? This becomes especially acute given the expectation that the medical community's ability to treat or cure genetic diseases will lag by several years its knowledge of the gene or groups of genes thought to be responsible for the diseases.Skip to next paragraph
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``The challenge is clearly to exploit the possibilities for human good while minimizing the harm that we're going to do with what we learn,'' says Dr. Murray, director of the Center for Biomedical Ethics at Case Western Reserve University's School of Medicine.
In an interview here, Murray readily points out that this challenge is as old as the field of genetics.
But, he adds, the accelerating pace of discoveries - and especially an organized program to map the chemical instructions, known collectively as the human genome - will greatly reduce the amount of time society has to come to grips with the ethical issues involved in human genetic research.
As a tool, a genome map ``will enable much more rapid identification of a whole bunch of relationships between genes and traits - some disease, some not disease,'' Murray says.
``It accelerates the whole process, and I'm concerned that we haven't thought through as a society'' the implications.
As many in the biology and medical communities see it, a concerted genome-mapping effort, such as the one proposed by the US Department of Energy, would lead to major advances in our understanding of topics ranging from human evolution to the causes and treatment of genetic diseases.
At the same time, genetic ``probes'' have been developed to look for susceptibility to disease or early death.
Such probes, Murray says, could ``help give people better information about their lives if they wanted it. Or it could be used to take choices away from people.''
He illustrates this with a hypothetical situation. ``If I have a [genetic] marker for cardiovascular disease and it's easy enough to detect, and we permit insurers to take that into account and refuse to write life or health insurance for me or charge me exorbitant rates, or if we permit employers to not hire me because of that, it might be very difficult for me or anybody who has the same marker to live decently.''
Another area of concern, he says, is the use of genetic techniques to assess the health prospects of unborn children - prenatal screening.
``There still will not be therapeutic options'' for many of the conditions such screening might uncover, Murray says, raising the likelihood of increasing numbers of abortions.
Such screening ``is also a problem in our response to the disabled. I have a friend who is a staunch feminist and a staunch champion of the rights of the disabled. She thinks about screening and abortion and she says, `Basically what you're doing is you're finding out who will be disabled and you're killing them before they can be born.'''
While she supports a woman's right to an abortion, he continues, she is also worried that abortions based on screening will lead to a kind of socially sanctioned discrimination against the disabled.
These are the kinds of issues that lawmakers and the public will have to grapple with, he adds.
But a major impediment ``is the pathetic lack of understanding that most people have about genetics, including physicians. We need to redouble our efforts in that area, from medical training to high school biology.''
Despite that, Murray says, he is hopeful about the nation's ability to thread its way through the ethical mine field that surrounds genetics issues. But what he finds especially intriguing is the impact the genetics revolution is likely to have on ``our self-understanding as individuals and as people.''
Citing the fundamental changes in humanity's view of itself that followed the work of Galileo, Copernicus, Darwin, Freud, Einstein, and others, Murray says, ``We managed to come to terms with them without abandoning our sense of ourselves as people, our potential worth, and our dignity. I think we will manage the same here.''
Referring to the genome-mapping project, he continues, ``To know all the notes does not account for my experience of what makes a beautiful symphony. And humankind cannot be reduced to genes. In one sense you can explain a lot of things with that, but it doesn't exhaust us. It doesn't begin to get at some of the most important things about us.''