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

TLDR

Public awareness of genetic testing was low in 1995, and the debate centers on whether genetic information differs from other medical data and warrants special legal protection. Despite 68 % willing to undergo testing for untreatable diseases and 56 % accepting a newborn DNA bank, these attitudes likely stem from public ignorance of genetic privacy risks rather than indifference.

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.