05895nam 2200757 a 450 991079182970332120230725021157.00-309-18646-31-282-94865-297866129486570-309-16217-3(CKB)2560000000070092(SSID)ssj0000468472(PQKBManifestationID)11287073(PQKBTitleCode)TC0000468472(PQKBWorkID)10507233(PQKB)11046630(MiAaPQ)EBC3378712(Au-PeEL)EBL3378712(CaPaEBR)ebr10439392(CaONFJC)MIL294865(OCoLC)923282752(EXLCZ)99256000000007009220110114d2010 uy 0engurcn|||||||||txtccrDirect-to-consumer genetic testing[electronic resource] summary of a workshop /Mary Fraker and Anne-Marie Mazza, rapporteurs ; Institute of Medicine and National Research Council of the National AcademiesWashington, D.C. National Academies Press2010xii, 93p"Committee on Science, Technology, and Law Policy and Global Affairs, Board on Life Sciences, Division on Earth and Life Studies, Forum on Drug Discovery, Development, and Translation, Board on Health Sciences Policy, Roundtable on Translating Genomic-Based Research for Health, Board on Health Sciences Policy, National Cancer Policy Forum, Board on Health Care Services."0-309-16216-5 Introduction -- Scientific foundations for direct-to-consumer genetic testing -- Personal and social issues -- Research and medical issues -- Impact on health care and public health -- Current legislative and regulatory framework in the United States -- Areas for further study."Today, scores of companies, primarily in the United States and Europe, are offering whole genome scanning services directly to the public. The proliferation of these companies and the services they offer demonstrate a public appetite for this information and where the future of genetics may be headed; they also demonstrate the need for serious discussion about the regulatory environment, patient privacy, and other policy implications of direct-to-consumer (DTC) genetic testing. Rapid advances in genetic research already have begun to transform clinical practice and our understanding of disease progression. Existing research has revealed a genetic basis or component for numerous diseases, including Parkinson's disease, Alzheimer's disease, diabetes, heart disease, and several forms of cancer. The availability of the human genome sequence and the HapMap, plummeting costs of high-throughput screening, and increasingly sophisticated computational analyses have led to an explosion of discoveries of linkages between patterns of genetic variation and disease susceptibility. While this research is by no means a straight path toward better public health, improved knowledge of the genetic linkages has the potential to change fundamentally the way health professionals and public health practitioners approach the prevention and treatment of disease. Realizing this potential will require greater sophistication in the interpretation of genetic tests, new training for physicians and other diagnosticians, and new approaches to communicating findings to the public. As this rapidly growing field matures, all of these questions require attention from a variety of perspectives. To discuss some of the foregoing issues, several units of the National Academies held a workshop on August 31 and September 1, 2009, to bring together a still-developing community of professionals from a variety of relevant disciplines, to educate the public and policy-makers about this emerging field, and to identify issues for future study. The meeting featured several invited presentations and discussions on the many technical, legal, policy, and ethical questions that such DTC testing raises, including: (1) overview of the current state of knowledge and the future research trajectory; (2) shared genes and emerging issues in privacy; (3) the regulatory framework; and (4) education of the public and the medical community."--Publisher's description.Medical geneticsCongressesGenomicsCongressesGenomicsMoral and ethical aspectsCongressesGeneticsMoral and ethical aspectsCongressesHuman geneticsMoral and ethical aspectsCongressesMedical geneticsGenomicsGenomicsMoral and ethical aspectsGeneticsMoral and ethical aspectsHuman geneticsMoral and ethical aspects616/.042Fraker Mary1520175Mazza Anne-Marie1520176Institute of Medicine (U.S.).Forum on Drug Discovery, Development, and Translation.Institute of Medicine (U.S.)National Research Council (U.S.)National Research Council (U.S.).Committee on Science, Technology, and Law.National Research Council (U.S.).Board on Life Sciences.National Research Council (U.S.).Division on Earth and Life Studies.Institute of Medicine (U.S.).Board on Health Sciences Policy.Institute of Medicine (U.S.).Roundtable on Translating Genomic-Based Research for Health.National Cancer Policy Forum (U.S.)Institute of Medicine (U.S.).Board on Health Care Services.MiAaPQMiAaPQMiAaPQBOOK9910791829703321Direct-to-consumer genetic testing3758723UNINA