High speed genetic testing, in whatever form it eventually comes to our doctors' offices, promises to radically transform the practice of medicine. It can be used to great medical benefit of all persons. At the same time, however, the social conditions in which we presently live are not ripe for exploiting this technology without causing as much if not more harm to the very individuals we seek to medically benefit. Until we can resolve the underlying contradictions in health care financing and access to medical care; until we can come to some consensus about the limits of using genetic information in employment; until we can establish a national policy on the privacy and confidentiality of electronic medical records; until we can empower individual patients to control the uses of their medical records; and until we can safeguard electronic medical records from their unscrupulous use by criminal interests; the volumes of genetic information that will be liberated by these technologies promise to harm as much as they promise to help.
Can we responsibly develop and use these genetic technologies before we solve these underlying problems, or will we only be forced to solve them when wide spread genetic testing hits the fan of commercial exploitation? I am not particularly optimistic. In-spite of the commitment of 5% of the Human Genome Project's funds to the study of the ethical, legal and social implications of genetics, the problems genetics raises are still with us. Has ELSI simply been ethical window dressing, absolving researchers, physicians and corporations of their responsibility to use new technology wisely? If we cannot translate even the basic recommendations of the ELSI Task Force on Genetics and Insurance into a coherent policy, then what purpose does this ethical reflection serve in advance, if we will only wait until a large enough number of persons are harmed by the introduction of genetic technology to routine medical practice?
In establishing ELSI, scientists and policy makers sought the advice of a broad range of disciplines to help advise and formulate policy in advance of what was forseen to be the revolutionary impact of genetics on all of our lives. That advice has been forthcoming in spades. Much remains controversial, but the road ahead is fairly clearly charted, if we have the will to address these issues now. But if we fail to have the will to make the changes necessary to make genetic technologies safe for society, what then? What responsibility do the scientists and physicians who have profitted enormously from this three billion dollar project have to the public who has paid for it and yet stands to equally and simultaneously be harmed (and helped) by it? But alas, so many of the scientists have lost their impartiality, have they not, by investing in development of the technology their work has made possible? It would be unrealistic for us to hope that the scientists who have so invested in these projects would, as a matter of principle, refuse to complete them until our social conditions have been transformed sufficiently to make these technologies genuinely safe for the public. Technology appears to have an inevitability about it that seems to drive itself into our lives and transform our society and self understanding. But is it really the technology that is the driving force, or is not just the thirst for profits that really fuels the engine of technological change?
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