Genetic Testing and the Use of Information

The combination of genetic research and information technology often raises some chilling questions of privacy and genetic discrimination. This text explores the issues of genetic privacy, the regulation of genetic testing and genetic discrimination.

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We are in the early years of a technological revolution arising from our understanding of the genetic meaning of life. Scientists' ability to manipulate and decode genes is advancing at an extraordinary pace - so fast we are often unprepared to handle the many vexing legal, economic, ethical and social issues they raise. The combination of genetic research and information technology raises often chilling questions of privacy and genetic discrimination. Should individuals be allowed personal property rights to their DNA, cells or tissues? How should policymakers regulate the biotechnology industry to maximize safety without stifling innovation? What are the appropriate uses of gene therapy and other genetic manipulations? In "Genetic Testing and the Use of Information", leading scholars grapple with issues of genetic privacy, the regulation of genetic testing and genetic discrimination. They consider such questions as: Who should have access to information derived from a genetic test? Should one be obligated to tell a spouse or a child test results? Should governments ever appropriately mandate individual genetic testing or community-wide genetic screening?
Will employers be able to require the release of genetic records as a condition of employment? Will insurance companies be allowed to use genetic information to determine risk? At what point does a genetic condition qualify as a disability under the American with Disabilities Act?