The Genetic Privacy Act: Proposed Model Legislation
| Publication year | 1995 |
| Pages | 2317 |
1995, October, Pg. 2317. The Genetic Privacy Act: Proposed Model Legislation
Technological advances continue to introduce a growing array of new types of information into our health care system. These advances are accompanied by concern for the privacy implications related to the use of such new information. Nowhere is this more true than in the field of molecular genetics, with the Human Genome Project ("HGP") leading the efforts of research scientists to map and understand all of the estimated 100,000 human genes.(fn1)
Genetic research is uncovering precise information about an individual's biological makeup and future health, and the health of the family members. The privacy implications surrounding the use of this information prompted the HGP director to identify four critical areas of concern: employment discrimination, privacy of genetic records, health insurance and use of genetic tests in routine clinical practice.(fn2) In response to these concerns, several states have enacted legislation limiting specific uses of genetic information in areas such as employment(fn3) and insurance.(fn4) The recently proposed Genetic Privacy Act ("Act") suggests a more comprehensive approach to the protection of genetic privacy.(fn5)
The Act is a proposal for federal legislation designed to offer broad protection against the collection and disclosure of genetic information without the individual's specific authorization. A task force, sponsored by the Department of Energy component of the HGP, drafted the Act. Initially, the task force was convened to develop guidelines for the protection of genetic information stored in databanks.(fn6) However, the group quickly became convinced that genetic privacy could not be adequately protected by limiting regulation to DNA databank information. With the proliferation of genetic testing and research, "DNA databanks" were becoming increasingly difficult to define, and focusing regulation on information in those banks assumed that the DNA samples were legitimately obtained and analyzed.(fn7)
The major premise underlying the Act is that genetic information is different from other types of personal information and, thus, requires special protection. This is particularly...
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