Health-Related Direct-to-Consumer Genetic Tests: A Public Health Assessment and Analysis of Practices Related to Internet-Based Tests for Risk of Thrombosis
Background: Recent years have seen increased concern about direct-to-consumer (DTC) genetic testing (i.e., the sale and use of genetic tests without involving a health care provider). Numerous professional organizations have developed policies in this area. However, little systematic evidence exists...
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| Veröffentlicht in: | Community genetics 2009-01, Vol.12 (2), p.92-104 |
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| container_title | Community genetics |
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| creator | Goddard, K.A.B. Robitaille, J. Dowling, N.F. Parrado, A.R. Fishman, J. Bradley, L.A. Moore, C.A. Khoury, M.J. |
| description | Background: Recent years have seen increased concern about direct-to-consumer (DTC) genetic testing (i.e., the sale and use of genetic tests without involving a health care provider). Numerous professional organizations have developed policies in this area. However, little systematic evidence exists to inform public policy about these tests. Methods: We conducted a systematic search to identify genetic tests that are sold DTC without involving a health care provider. We evaluated the practices of companies offering DTC genetic tests for risk of thrombosis using criteria from multiple sources and a minimal set of key practices. Results: We identified 84 instances of currently available health-related DTC genetic tests sold on 27 Web sites; the most common were for pharmacogenomics (12), risk of thrombosis (10), and nutrigenomics (10). For the DTC genetic tests for risk of thrombosis, we found low adherence to recommendations. Online information was frequently incomplete and had low agreement with professional recommendations. Conclusion: Our findings document the rapid growth in the availability of health-related DTC genetic tests and highlight the need to improve the delivery of DTC genetic tests. A major implication of this study is the need for the scientific and medical community to develop consistent recommendations to increase their impact. |
| doi_str_mv | 10.1159/000176794 |
| format | Article |
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Numerous professional organizations have developed policies in this area. However, little systematic evidence exists to inform public policy about these tests. Methods: We conducted a systematic search to identify genetic tests that are sold DTC without involving a health care provider. We evaluated the practices of companies offering DTC genetic tests for risk of thrombosis using criteria from multiple sources and a minimal set of key practices. Results: We identified 84 instances of currently available health-related DTC genetic tests sold on 27 Web sites; the most common were for pharmacogenomics (12), risk of thrombosis (10), and nutrigenomics (10). For the DTC genetic tests for risk of thrombosis, we found low adherence to recommendations. Online information was frequently incomplete and had low agreement with professional recommendations. Conclusion: Our findings document the rapid growth in the availability of health-related DTC genetic tests and highlight the need to improve the delivery of DTC genetic tests. A major implication of this study is the need for the scientific and medical community to develop consistent recommendations to increase their impact.</description><identifier>ISSN: 1662-4246</identifier><identifier>EISSN: 1662-8063</identifier><identifier>DOI: 10.1159/000176794</identifier><identifier>PMID: 19039253</identifier><language>eng</language><publisher>Basel, Switzerland: S. Karger AG</publisher><subject>Factor V - genetics ; Genetic Counseling ; Genetic screening ; Genetic Services ; Genetic Techniques ; Health care ; Humans ; Information Services ; Internet ; Marketing of Health Services ; Nutrigenomics ; Original Paper ; Patient Education as Topic ; Pharmacogenetics ; Public Health ; Public Policy ; Research Design ; Risk ; Thromboembolism ; Thrombosis - diagnosis ; Thrombosis - etiology</subject><ispartof>Community genetics, 2009-01, Vol.12 (2), p.92-104</ispartof><rights>2008 S. Karger AG, Basel</rights><rights>Copyright 2008 S. Karger AG, Basel.</rights><rights>Copyright (c) 2008 S. Karger AG, Basel</rights><rights>Copyright © 2009 by S. Karger AG, Basel 2009</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c474t-b0ac7f8156a965625d0e90d8025de3da18730bacc9c7c4b47efc71f279bd68ce3</citedby><cites>FETCH-LOGICAL-c474t-b0ac7f8156a965625d0e90d8025de3da18730bacc9c7c4b47efc71f279bd68ce3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.jstor.org/stable/pdf/26786551$$EPDF$$P50$$Gjstor$$H</linktopdf><linktohtml>$$Uhttps://www.jstor.org/stable/26786551$$EHTML$$P50$$Gjstor$$H</linktohtml><link.rule.ids>230,314,776,780,799,881,2423,27901,27902,57992,58225</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/19039253$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Goddard, K.A.B.</creatorcontrib><creatorcontrib>Robitaille, J.</creatorcontrib><creatorcontrib>Dowling, N.F.</creatorcontrib><creatorcontrib>Parrado, A.R.</creatorcontrib><creatorcontrib>Fishman, J.</creatorcontrib><creatorcontrib>Bradley, L.A.</creatorcontrib><creatorcontrib>Moore, C.A.</creatorcontrib><creatorcontrib>Khoury, M.J.</creatorcontrib><title>Health-Related Direct-to-Consumer Genetic Tests: A Public Health Assessment and Analysis of Practices Related to Internet-Based Tests for Risk of Thrombosis</title><title>Community genetics</title><addtitle>Public Health Genomics</addtitle><description>Background: Recent years have seen increased concern about direct-to-consumer (DTC) genetic testing (i.e., the sale and use of genetic tests without involving a health care provider). Numerous professional organizations have developed policies in this area. However, little systematic evidence exists to inform public policy about these tests. Methods: We conducted a systematic search to identify genetic tests that are sold DTC without involving a health care provider. We evaluated the practices of companies offering DTC genetic tests for risk of thrombosis using criteria from multiple sources and a minimal set of key practices. Results: We identified 84 instances of currently available health-related DTC genetic tests sold on 27 Web sites; the most common were for pharmacogenomics (12), risk of thrombosis (10), and nutrigenomics (10). For the DTC genetic tests for risk of thrombosis, we found low adherence to recommendations. Online information was frequently incomplete and had low agreement with professional recommendations. Conclusion: Our findings document the rapid growth in the availability of health-related DTC genetic tests and highlight the need to improve the delivery of DTC genetic tests. A major implication of this study is the need for the scientific and medical community to develop consistent recommendations to increase their impact.</description><subject>Factor V - genetics</subject><subject>Genetic Counseling</subject><subject>Genetic screening</subject><subject>Genetic Services</subject><subject>Genetic Techniques</subject><subject>Health care</subject><subject>Humans</subject><subject>Information Services</subject><subject>Internet</subject><subject>Marketing of Health Services</subject><subject>Nutrigenomics</subject><subject>Original Paper</subject><subject>Patient Education as Topic</subject><subject>Pharmacogenetics</subject><subject>Public Health</subject><subject>Public Policy</subject><subject>Research Design</subject><subject>Risk</subject><subject>Thromboembolism</subject><subject>Thrombosis - diagnosis</subject><subject>Thrombosis - etiology</subject><issn>1662-4246</issn><issn>1662-8063</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2009</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>8G5</sourceid><sourceid>BENPR</sourceid><sourceid>GUQSH</sourceid><sourceid>M2O</sourceid><recordid>eNqFkc1LJDEQxcOirF972LvK4GHBQzuVdDrpXASZ3VVBEETPIZ2u1h57OpqkBf97M8w4o148VcH71eMlj5DfFE4oLdQYAKgUUvEfZJsKwbISRL6x3DnjYovshDAFEFyA-Em2qIJcsSLfJuMLNF18yG6wMxHr0d_Wo41ZdNnE9WGYoR-dY4-xtaNbDDHskc3GdAF_Lecuufv_73ZykV1dn19Ozq4yyyWPWQXGyqakhTBKFIIVNaCCuoS0YV4bWsocKmOtstLyiktsrKQNk6qqRWkx3yWnC9-noZphbbGP3nT6ybcz41-1M63-rPTtg753LzpZgFQsGfxZGnj3PKToetYGi11nenRD0EJIVgJV34IMFONQ0AQefQGnbvB9-gUti2RXCjWHjheQ9S4Ej80qMgU9L0uvykrs4cc3rsllOwnYXwCPxt-jXwPv9wcLeRqiW6tsHqVIgd8AiASgrw</recordid><startdate>20090101</startdate><enddate>20090101</enddate><creator>Goddard, K.A.B.</creator><creator>Robitaille, J.</creator><creator>Dowling, N.F.</creator><creator>Parrado, A.R.</creator><creator>Fishman, J.</creator><creator>Bradley, L.A.</creator><creator>Moore, C.A.</creator><creator>Khoury, M.J.</creator><general>S. 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genetics</topic><topic>Genetic Counseling</topic><topic>Genetic screening</topic><topic>Genetic Services</topic><topic>Genetic Techniques</topic><topic>Health care</topic><topic>Humans</topic><topic>Information Services</topic><topic>Internet</topic><topic>Marketing of Health Services</topic><topic>Nutrigenomics</topic><topic>Original Paper</topic><topic>Patient Education as Topic</topic><topic>Pharmacogenetics</topic><topic>Public Health</topic><topic>Public Policy</topic><topic>Research Design</topic><topic>Risk</topic><topic>Thromboembolism</topic><topic>Thrombosis - diagnosis</topic><topic>Thrombosis - etiology</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Goddard, K.A.B.</creatorcontrib><creatorcontrib>Robitaille, J.</creatorcontrib><creatorcontrib>Dowling, N.F.</creatorcontrib><creatorcontrib>Parrado, A.R.</creatorcontrib><creatorcontrib>Fishman, J.</creatorcontrib><creatorcontrib>Bradley, L.A.</creatorcontrib><creatorcontrib>Moore, C.A.</creatorcontrib><creatorcontrib>Khoury, M.J.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Health and Safety Science Abstracts (Full archive)</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Biology Database (Alumni Edition)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Science Database (Alumni Edition)</collection><collection>ProQuest Pharma Collection</collection><collection>Public Health Database</collection><collection>Technology Research Database</collection><collection>ProQuest SciTech Collection</collection><collection>ProQuest Natural Science Collection</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>Research Library (Alumni Edition)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest One Sustainability</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>Biological Science Collection</collection><collection>ProQuest Central</collection><collection>Natural Science Collection</collection><collection>Environmental Sciences and Pollution Management</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Engineering Research Database</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>Research Library Prep</collection><collection>SciTech Premium Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>ProQuest Biological Science Collection</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Research Library</collection><collection>Science Database</collection><collection>Biological Science Database</collection><collection>Research Library (Corporate)</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central Basic</collection><collection>Genetics Abstracts</collection><collection>Safety Science and Risk</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Community genetics</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Goddard, K.A.B.</au><au>Robitaille, J.</au><au>Dowling, N.F.</au><au>Parrado, A.R.</au><au>Fishman, J.</au><au>Bradley, L.A.</au><au>Moore, C.A.</au><au>Khoury, M.J.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Health-Related Direct-to-Consumer Genetic Tests: A Public Health Assessment and Analysis of Practices Related to Internet-Based Tests for Risk of Thrombosis</atitle><jtitle>Community genetics</jtitle><addtitle>Public Health Genomics</addtitle><date>2009-01-01</date><risdate>2009</risdate><volume>12</volume><issue>2</issue><spage>92</spage><epage>104</epage><pages>92-104</pages><issn>1662-4246</issn><eissn>1662-8063</eissn><abstract>Background: Recent years have seen increased concern about direct-to-consumer (DTC) genetic testing (i.e., the sale and use of genetic tests without involving a health care provider). Numerous professional organizations have developed policies in this area. However, little systematic evidence exists to inform public policy about these tests. Methods: We conducted a systematic search to identify genetic tests that are sold DTC without involving a health care provider. We evaluated the practices of companies offering DTC genetic tests for risk of thrombosis using criteria from multiple sources and a minimal set of key practices. Results: We identified 84 instances of currently available health-related DTC genetic tests sold on 27 Web sites; the most common were for pharmacogenomics (12), risk of thrombosis (10), and nutrigenomics (10). For the DTC genetic tests for risk of thrombosis, we found low adherence to recommendations. Online information was frequently incomplete and had low agreement with professional recommendations. Conclusion: Our findings document the rapid growth in the availability of health-related DTC genetic tests and highlight the need to improve the delivery of DTC genetic tests. A major implication of this study is the need for the scientific and medical community to develop consistent recommendations to increase their impact.</abstract><cop>Basel, Switzerland</cop><pub>S. Karger AG</pub><pmid>19039253</pmid><doi>10.1159/000176794</doi><tpages>13</tpages><oa>free_for_read</oa></addata></record> |
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| ispartof | Community genetics, 2009-01, Vol.12 (2), p.92-104 |
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| source | Jstor Complete Legacy; Karger Journals; MEDLINE; Alma/SFX Local Collection |
| subjects | Factor V - genetics Genetic Counseling Genetic screening Genetic Services Genetic Techniques Health care Humans Information Services Internet Marketing of Health Services Nutrigenomics Original Paper Patient Education as Topic Pharmacogenetics Public Health Public Policy Research Design Risk Thromboembolism Thrombosis - diagnosis Thrombosis - etiology |
| title | Health-Related Direct-to-Consumer Genetic Tests: A Public Health Assessment and Analysis of Practices Related to Internet-Based Tests for Risk of Thrombosis |
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