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Author argues that the Genetic Privacy Act fails to protect nucleic acid-based information as it relates to individual privacy, yet overburdens medical and scientific research with vague consent standards.
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With the advent of the Human Genome Project and widespread fears over human cloning and medical privacy, a number of states have moved to protect genetic privacy. Oregon's unique Genetic Privacy Act of 1995, which declared that an individual had property rights to their DNA, has provoked national and international interest and controversy. This paper critically reviews the literature on genetic privacy and gene patenting from law, philosophy, science and anthropology. The debate in Oregon, from 1995 to 2001, illustrates many of the key issues in this emerging area. Both sides of the debate invoke the property metaphor, reinforcing deterministic assumptions and avoiding more fundamental questions about the integrity of the body and self-identity. The anthropological critique of the commodification of the body, and the concept of 'embodiment' are useful in analyzing the debate over DNA as property.
Legislators are considering the conflicting concerns of consumers, researchers, health care providers, and business in the rapidly developing area of genetics. The Oregon Genetic Privacy Act of 1995 was written to protect the individual's right to genetic privacy by providing legal protection for medical information, tissue samples, and DNA samples. This legislation has had an impact on the academic medical center of Oregon Health Sciences University (OHSU) with its teaching hospital and associated clinics, both in providing medical services and in research. This impact has occurred in several areas: (1) informed consent, (2) ownership of genetic information, and (3) security of medical information. It affects both patient care and research. OHSU and other academic medical centers have a mandate to provide leadership in the education of medical students, residents, and physicians about genetic privacy and the issues and areas affected by it. As genetic privacy legislation is developed and enacted at state and federal levels, the needs of individuals must be balanced with the needs of institutions and of research in the larger context of societal needs.
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Molecular Biology is revolutionizing medicine. There are a number of conditions, particularly exemplified by the long QT syndrome, where there is no structural abnormality but where a subset of patients is prone to sudden death. The issues of appropriate care are very complex, because there is tremendous overlap between patients with prolongation of the QT who remain asymptomatic and those with prolongation who are very symptomatic. Furthermore, even those who are prone to have one of the abnormal genes, may be asymptomatic. A large literature has developed, from both legal and ethical aspects, related to the fact that in genetic disease per se, not only is the person at risk, but so are many members of his or her family. A large literature has also developed as to which should be prime, the patient's privacy or the responsibility to make sure the entire family is knowledgeable and perhaps tested. At the present moment our care is based upon the fact that the precise identification of the gene is not yet available on a routine basis. This of course, may soon change. But we will still have difficult decisions to make. Obviously, we have a responsibility as physicians to be as precise as our discipline allows, but we have a responsibility to be flexible. Relief of anxiety, as an example, has to be a prime issue. This is certainly the case now when any information related to infants with potential sudden death is still incomplete. We must not approach the care of the patient in such a way that protection of the physician may interfere with appropriate care. The discussion necessarily includes a variety of aspects.
Advances in genetic testing and research are creating increasing concern regarding genetic privacy. Current and proposed federal and state legislation has failed to provide adequate protection due to confusion over the meaning of privacy, inconsistency in the definition of genetic information, and lack of clarity with regard to the role of insurers in a market driven healthcare environment. Drawing on examples of current and proposed legislation, this paper explores these ambiguities with a view toward future health policy alternatives.
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