The Genetic Privacy Act: An Analysis of Privacy and Research Concerns

In the last few years, a great deal of attention has been paid to the effects that the achievements of the Human Genome Project will have on the confidentiality of medical information. The Genetic Privacy Act (GPA) is an attempt to address the privacy, confidentiality, and property rights relating to obtaining, requesting, using, storing, and disposing of genetic material. The GPA grew out of concerns over the vast amount of genetic information that is a product of the Human Genome Project. The central goals of the GPA are twofold: (1) to define an individual's right to control access to their genetic material and the privilege to control the information derived therefrom; and (2) to prevent potential and actual abuse of genetic information by third parties, such as insurance companies, employers, and government. The GPA is one of a group of proposals that seek to control the flow of medical information from the individual to health care professionals and to other persons.

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References

See Merz , J. , “Privacy, Genetics, and Human Tissue Research,” Center for Bioethics Newsletter , 1 ( 1996 ): 1 – 4 .Google Scholar

See Annas , G.J. Glantz , L.H. Roche , P.A. , The Genetic Privacy Act and Commentary ( Boston : Boston University-School of Public Health , 1995 ) (hereinafter Genetic Privacy Act).Google Scholar

The Genetic Privacy Act (GPA) was supported by a grant from the Human Genome Project Working Group on Ethical, Legal and Social Implications. Id. at ix–x.Google Scholar

See American Jurisprudence (Eagan: West Group, 2nd ed., Vol. 61, Supp. 1995): § 165.3 (citing a new section that includes the Uniform Health-Care Information Act). See also Brown , B. , “Genetic Testing, Access to Genetic Data, and Discrimination: Conceptual Legislative Models,” Suffolk University Law Review , 27 ( 1993 ): 1573 –92.Google Scholar

The GPA can be subdivided into the following categories: (1) the drafters' intent and basis for the Act; (2) consent requirements for the collection and analysis of deoxyribonucleic acid (DNA) samples; (3) rights relating to the disclosure of private genetic information; (4) exceptions to the confidentiality provisions of the Act; (5) rules relating to research activities; (6) the rights of individuals who are incompetent to give their consent; (7) miscellaneous provisions; and (8) enforcement and other laws.Google Scholar