Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations

Author:

Annas George J.,Glantz Leonard H.,Roche Patricia A.

Abstract

Only 27 percent of Americans in a 1995 Harris poll said they had read or heard “quite a lot” about genetic tests. Nonetheless, 68 percent said they would be either “very likely” or “somewhat likely” to undergo genetic testing even for diseases “for which there is presently no cure or treatment.” Perhaps most astonishing, 56 percent found it either “very” or “somewhat acceptable” to develop a government computerized DNA bank with samples taken from all newborns, and their names attached to the samples. This does not necessarily mean the public is unconcerned about genetic privacy. More likely it means that the public is still uninformed about the risks associated with genetic testing, and has not thought at all about the risks involved in storing identifiable DNA samples.A central question presented by genetic screening and testing is whether the genetic information so obtained is different in kind from other medical information (such as family history and cholesterol levels), and, if so, whether this means that it should receive special legal protection.

Publisher

Cambridge University Press (CUP)

Subject

Health Policy,General Medicine,Issues, ethics and legal aspects

Reference29 articles.

1. 13 Id. § 103(a).

2. 18 The presence of an adult family member would be required unless the minor is pregnant. Because a pregnant woman has all the rights and authority of a competent adult in regard to analysis of her DNA or that of her fetus (§§ 151, 152), the presence of a family member would not be required if a pregnant sixteen or seventeen year old sought genetic analysis in regard to decisions regarding pregnancy. That such young women would seek such information is highly unlikely. Requiring the involvement of at least one adult member at the point, where questions regarding the benefits of DNA analysis are normally raised and answered, is intended to encourage discussion and support among family members. As stated earlier, genetic information includes family information. We also think it important to have an adult available to help the minor deal with information that might affect other family members.

3. 24 See in context, the Uniform Health Care Information Act, U.L.A. 478–504 (1988), which permits disclosure of patient information in a variety of circumstances without the patient's prior authorization.

4. 14 Hubbard, R. McGoodwin, W. , “The Danger of ‘Ethnic Genetics’,” Boston Globe, Oct. 13, 1995, at 19.

5. “Genetic Prophecy and Genetic Privacy: Can We Prevent the Dream from Becoming a Nightmare?,”;Annas;American Journal of Public Health,1995

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