Direct-to-Consumer Genetic Testing Summary of a Workshop (2011) / Chapter Skim
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Introduction
Introduction
Pages 1-6
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Alan E Guttmacher, former director of the National Human Genome Research Institute, and now Director of the National Institute for Child Health and Human Development observed, "Welcome to the Genome Era." Major advances in genomic technologies in the early 21st century have helped to increase dramatically the number of genes identified as playing a role in a variety of common disorders.4 These advances, 1 Hamilton, A, TIME's Best Inventions of 2008, Time Magazine, October 29, 2008.
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The rapid growth and evolution of the direct-to-consumer (DTC) genetic testing, "defined as genetic tests and services that are advertised directly to consumers, that are purchased through consumer-initiated requests, and that provide test results directly to the consumer without the involvement of the consumer's health care provider," has increased the focus on a number of issues raised by genetic testing.5 These include scientific, clinical, and technical issues; economic and financial issues; 5 Direct-to-Consumer Genetic Testing, Report of the Secretary's Advisory Committee on Genetics, Health, and Society, April 2010.
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Beyond the strictly technical criteria of a test's sensitivity, specificity, and analytical validity, what are the associated positive and negative predictive values, and how useful to the consumer is the resulting information? Can the results be used to predict disease susceptibility, and do they provide enough information to enable informed decision making about preventive measures and treatment, including lifestyle changes, that can affect patient outcomes?
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research and medical issues in the context of DTC genetic testing -- notably informed consent, the role of institutional review boards, and whether or not the customers of DTC genetic testing companies should be considered human research subjects; (4) the impact on health care and public health, looking particularly at economics, physician aware ness and education, and genetic counseling; and (5)
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Appendixes include a glossary of terms and acronyms, an overview of how DTC genetic testing is currently regulated outside the United States, a list of currently available DTC genetic tests, and a representative list of DTC genetic testing companies. Additional appendixes provide biographies of the workshop's planning group, the workshop agenda and participants, and the membership of the oversight boards and committees.
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