[ { "key": "FBEDDKZ8", "version": 1, "library": { "type": "group", "id": 6535, "name": "DTCGenotyping", "links": { "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/6535/items/FBEDDKZ8", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping/items/FBEDDKZ8", "type": "text/html" } }, "meta": { "createdByUser": { "id": 77781, "username": "Iren25", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/iren25", "type": "text/html" } } }, "creatorSummary": "Leavit et al.", "parsedDate": "2008-10-20", "numChildren": 0 }, "data": { "key": "FBEDDKZ8", "version": 1, "itemType": "newspaperArticle", "title": "Inaugural National Summit on Personalized Health Care Outlines Vision, Strategies for Bringing Patients Personalized, Genetic-Informed Care", "creators": [ { "creatorType": "author", "firstName": "Michael", "lastName": "Leavit" }, { "creatorType": "author", "firstName": "Robert", "lastName": "Bennett," }, { "creatorType": "author", "firstName": "Orrin", "lastName": "Hatch" } ], "abstractNote": "The Organizing Committee for the National Summit on Personalized Health Care (NSPHC) announced that its inaugural event, held October 5 to October 7 in Deer Valley, Utah, produced broad-based consensus and inter-disciplinary working teams and initiatives to personalized healthcare into clinical practice. Utilizing advanced molecular diagnostics and targeted therapies, personalized healthcare holds the promise of dramatically improved outcomes and quality of care at substantially lower cost.", "publicationTitle": "Biotech Business Week", "publisher": "", "place": "", "date": "October 20, 2008", "volume": "", "issue": "", "edition": "", "section": "Genetics & Genomics", "pages": "1450", "ISSN": "", "DOI": "", "citationKey": "", "url": "http://www.lexisnexis.com/us/lnacademic/results/docview/docview.do?docLinkInd=true&risb=21_T8241097837&format=GNBFI&sort=RELEVANCE&startDocNo=1&resultsUrlKey=29_T8241097840&cisb=22_T8241097839&treeMax=true&treeWidth=0&csi=246798&docNo=22", "accessDate": "", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "", "libraryCatalog": "", "callNumber": "", "rights": "", "extra": "", "tags": [], "collections": [ "UR5DBF36" ], "relations": {}, "dateAdded": "2010-01-05T07:08:26Z", "dateModified": "2010-01-05T07:13:10Z" } }, { "key": "U9QFG9WZ", "version": 1, "library": { "type": "group", "id": 6535, "name": "DTCGenotyping", "links": { "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/6535/items/U9QFG9WZ", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping/items/U9QFG9WZ", "type": "text/html" } }, "meta": { "createdByUser": { "id": 77781, "username": "Iren25", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/iren25", "type": "text/html" } } }, "creatorSummary": "Hudson et al.", "parsedDate": "2007-09", "numChildren": 0 }, "data": { "key": "U9QFG9WZ", "version": 1, "itemType": "journalArticle", "title": "ASHG Statement on Direct-to-Consumer Genetic Testing in the United States", "creators": [ { "creatorType": "author", "firstName": "Kathy", "lastName": "Hudson" }, { "creatorType": "author", "firstName": "Gail", "lastName": "Javitt" }, { "creatorType": "author", "firstName": "Wylie", "lastName": "Burke" }, { "creatorType": "author", "firstName": "Peter", "lastName": "Byers" } ], "abstractNote": "", "publicationTitle": "The American Journal of Human Genetics", "publisher": "", "place": "", "date": "September 2007", "volume": "81", "issue": "3", "section": "", "partNumber": "", "partTitle": "", "pages": "635-637", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "", "DOI": "10.1086/521634", "citationKey": "", "url": "http://www.sciencedirect.com/science/article/B8JDD-4R29JC1-T/2/13d56c2c15c629d5871527891274dd49", "accessDate": "2010-01-05T06:56:52Z", "PMID": "", "PMCID": "", "ISSN": "0002-9297", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "", "libraryCatalog": "ScienceDirect", "callNumber": "", "rights": "", "extra": "", "tags": [], "collections": [ "T87CUEAZ" ], "relations": {}, "dateAdded": "2010-01-05T06:56:52Z", "dateModified": "2010-01-05T06:56:52Z" } }, { "key": "T4GD22UR", "version": 1, "library": { "type": "group", "id": 6535, "name": "DTCGenotyping", "links": { "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/6535/items/T4GD22UR", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping/items/T4GD22UR", "type": "text/html" } }, "meta": { "createdByUser": { "id": 77781, "username": "Iren25", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/iren25", "type": "text/html" } } }, "creatorSummary": "Gollust et al.", "parsedDate": "2002-10-09", "numChildren": 0 }, "data": { "key": "T4GD22UR", "version": 1, "itemType": "journalArticle", "title": "Limitations of Direct-to-Consumer Advertising for Clinical Genetic Testing", "creators": [ { "creatorType": "author", "firstName": "Sarah E.", "lastName": "Gollust" }, { "creatorType": "author", "firstName": "Sara Chandros", "lastName": "Hull" }, { "creatorType": "author", "firstName": "Benjamin S.", "lastName": "Wilfond" } ], "abstractNote": "Although direct-to-consumer (DTC) advertisements for pharmaceuticals have been appearing in the mass media for 20 years, DTC advertisements for genetic testing have only recently appeared. Advertisements for genetic testing can provide both consumers and physicians with information about test availability in an expanding market. However, 3 factors limit the value and appropriateness of advertisements: complex information, a complicated social context surrounding genetics, and a lack of consensus about the clinical utility of some tests. Consideration of several advertisements suggests that they overstate the value of genetic testing for consumers' clinical care. Furthermore, advertisements may provide misinformation about genetics, exaggerate consumers' risks, endorse a deterministic relationship between genes and disease, and reinforce associations between diseases and ethnic groups. Advertising motivated by factors other than evidence of the clinical value of genetic tests can manipulate consumers' behavior by exploiting their fears and worries. At this time, DTC advertisements are inappropriate, given the public's limited sophistication regarding genetics and the lack of comprehensive premarket review of tests or oversight of advertisement content. Existing Federal Trade Commission and Food and Drug Administration regulations for other types of health-related advertising should be applied to advertisements for genetic tests.", "publicationTitle": "JAMA", "publisher": "", "place": "", "date": "October 9, 2002", "volume": "288", "issue": "14", "section": "", "partNumber": "", "partTitle": "", "pages": "1762-1767", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "", "DOI": "10.1001/jama.288.14.1762", "citationKey": "", "url": "http://jama.ama-assn.org/cgi/content/abstract/288/14/1762", "accessDate": "2009-12-28T04:02:39Z", "PMID": "", "PMCID": "", "ISSN": "", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "", "libraryCatalog": "HighWire", "callNumber": "", "rights": "", "extra": "", "tags": [], "collections": [ "T87CUEAZ" ], "relations": {}, "dateAdded": "2009-12-28T04:02:39Z", "dateModified": "2009-12-28T04:02:39Z" } }, { "key": "65PHTDE8", "version": 1, "library": { "type": "group", "id": 6535, "name": "DTCGenotyping", "links": { "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/6535/items/65PHTDE8", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping/items/65PHTDE8", "type": "text/html" } }, "meta": { "createdByUser": { "id": 77781, "username": "Iren25", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/iren25", "type": "text/html" } } }, "creatorSummary": "Javitt et al.", "parsedDate": "2004", "numChildren": 0 }, "data": { "key": "65PHTDE8", "version": 1, "itemType": "journalArticle", "title": "Direct-to-Consumer Genetic Tests, Government Oversight, and the First Amendment: What the Government Can (and Can't) Do to Protect the Public's Health", "creators": [ { "creatorType": "author", "firstName": "Gail H", "lastName": "Javitt" }, { "creatorType": "author", "firstName": "Erica", "lastName": "Stanley" }, { "creatorType": "author", "firstName": "Kathy", "lastName": "Hudson" } ], "abstractNote": "", "publicationTitle": "Oklahoma Law Review", "publisher": "", "place": "", "date": "2004", "volume": "57", "issue": "", "section": "", "partNumber": "", "partTitle": "", "pages": "251", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "Okla. L. Rev.", "DOI": "", "citationKey": "", "url": "http://heinonline.org/HOL/Page?handle=hein.journals/oklrv57&id=267&div=&collection=journals", "accessDate": "2009-12-28T03:56:48Z", "PMID": "", "PMCID": "", "ISSN": "", "archive": "", "archiveLocation": "", "shortTitle": "Direct-to-Consumer Genetic Tests, Government Oversight, and the First Amendment", "language": "", "libraryCatalog": "", "callNumber": "", "rights": "", "extra": "", "tags": [], "collections": [ "T87CUEAZ" ], "relations": {}, "dateAdded": "2009-12-28T03:56:48Z", "dateModified": "2009-12-28T03:56:48Z" } }, { "key": "36TPP2SD", "version": 1, "library": { "type": "group", "id": 6535, "name": "DTCGenotyping", "links": { "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/6535/items/36TPP2SD", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping/items/36TPP2SD", "type": "text/html" } }, "meta": { "createdByUser": { "id": 77781, "username": "Iren25", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/iren25", "type": "text/html" } } }, "creatorSummary": "Gollust et al.", "parsedDate": "2003", "numChildren": 0 }, "data": { "key": "36TPP2SD", "version": 1, "itemType": "journalArticle", "title": "Direct-to-consumer sales of genetic services on the Internet", "creators": [ { "creatorType": "author", "firstName": "Sarah E.", "lastName": "Gollust" }, { "creatorType": "author", "firstName": "Benjamin S.", "lastName": "Wilfond" }, { "creatorType": "author", "firstName": "Sara Chandros", "lastName": "Hull" } ], "abstractNote": "", "publicationTitle": "Genetics in Medicine", "publisher": "", "place": "", "date": "07/2003", "volume": "5", "issue": "4", "section": "", "partNumber": "", "partTitle": "", "pages": "332-337", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "Genetics in Medicine", "DOI": "10.1097/01.GIM.0000076972.83711.48", "citationKey": "", "url": "http://journals.lww.com/geneticsinmedicine/Abstract/2003/07000/Direct_to_consumer_sales_of_genetic_services_on.10.aspx", "accessDate": "2009-12-28T03:53:40Z", "PMID": "", "PMCID": "", "ISSN": "1098-3600", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "", "libraryCatalog": "CrossRef", "callNumber": "", "rights": "", "extra": "", "tags": [], "collections": [ "8KZAI4XD" ], "relations": {}, "dateAdded": "2009-12-28T03:53:40Z", "dateModified": "2009-12-28T03:53:40Z" } }, { "key": "VA9WVSVK", "version": 1, "library": { "type": "group", "id": 6535, "name": "DTCGenotyping", "links": { "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/6535/items/VA9WVSVK", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping/items/VA9WVSVK", "type": "text/html" } }, "meta": { 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"Marks" }, { "creatorType": "author", "firstName": "Ann", "lastName": "Morning" }, { "creatorType": "author", "firstName": "Alondra", "lastName": "Nelson" }, { "creatorType": "author", "firstName": "Pilar", "lastName": "Ossorio" }, { "creatorType": "author", "firstName": "Jenny", "lastName": "Reardon" }, { "creatorType": "author", "firstName": "Susan M.", "lastName": "Reverby" }, { "creatorType": "author", "firstName": "Kimberly", "lastName": "TallBear" } ], "abstractNote": "", "publicationTitle": "Science", "publisher": "", "place": "", "date": "October 19, 2007", "volume": "318", "issue": "5849", "section": "", "partNumber": "", "partTitle": "", "pages": "399-400", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "", "DOI": "10.1126/science.1150098", "citationKey": "", "url": "http://www.sciencemag.org", "accessDate": "2009-12-28T03:49:27Z", "PMID": "", "PMCID": "", "ISSN": "", "archive": "", "archiveLocation": "", "shortTitle": "GENETICS", "language": "", "libraryCatalog": "HighWire", "callNumber": "", "rights": "", "extra": "", "tags": [], "collections": [ "T87CUEAZ" ], "relations": {}, "dateAdded": "2009-12-28T03:49:27Z", "dateModified": "2009-12-28T03:49:27Z" } }, { "key": "VNJJD2G6", "version": 1, "library": { "type": "group", "id": 6535, "name": "DTCGenotyping", "links": { "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/6535/items/VNJJD2G6", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping/items/VNJJD2G6", "type": "text/html" } }, "meta": { "createdByUser": { "id": 77781, "username": "Iren25", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/iren25", "type": "text/html" } } }, "creatorSummary": "Lee et al.", "parsedDate": "2009-07-03", "numChildren": 0 }, "data": { "key": "VNJJD2G6", "version": 1, "itemType": "journalArticle", "title": "The Illusive Gold Standard in Genetic Ancestry Testing", "creators": [ { "creatorType": "author", "firstName": "Sandra Soo-Jin", "lastName": "Lee" }, { "creatorType": "author", "firstName": "Deborah A.", "lastName": "Bolnick" }, { "creatorType": "author", "firstName": "Troy", "lastName": "Duster" }, { "creatorType": "author", "firstName": "Pilar", "lastName": "Ossorio" }, { "creatorType": "author", "firstName": "Kimberly", "lastName": "TallBear" } ], "abstractNote": "", "publicationTitle": "Science", "publisher": "", "place": "", "date": "July 3, 2009", "volume": "325", "issue": "5936", "section": "", "partNumber": "", "partTitle": "", "pages": "38-39", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "", "DOI": "10.1126/science.1173038", "citationKey": "", "url": "http://www.sciencemag.org", "accessDate": "2009-12-28T03:29:12Z", "PMID": "", "PMCID": "", "ISSN": "", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "", "libraryCatalog": "HighWire", "callNumber": "", "rights": "", "extra": "", "tags": [], "collections": [ "T87CUEAZ" ], "relations": {}, "dateAdded": "2009-12-28T03:29:12Z", "dateModified": "2009-12-28T03:29:12Z" } }, { "key": "C88D5X4J", "version": 1, "library": { "type": "group", "id": 6535, "name": "DTCGenotyping", "links": { "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/6535/items/C88D5X4J", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping/items/C88D5X4J", "type": "text/html" } }, "meta": { "createdByUser": { "id": 77781, "username": "Iren25", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/iren25", "type": "text/html" } } }, "creatorSummary": "Kaye", "parsedDate": "2008-10-15", "numChildren": 0 }, "data": { "key": "C88D5X4J", "version": 1, "itemType": "journalArticle", "title": "The regulation of direct-to-consumer genetic tests", "creators": [ { "creatorType": "author", "firstName": "Jane", "lastName": "Kaye" } ], "abstractNote": "The past year has been marked by the emergence of several companies, such as 23andMe, deCODEME, Navigenics and Knome, offering tests using genome-wide technology direct to consumers over the internet. On the basis of the published research findings of GWAS and other studies, these companies will calculate an individual's risk to a number of common diseases, without the necessity of going through a medical practitioner. One of the significant challenges of direct-to-consumer testing is that it shifts the control of genetic testing from the clinical domain and medical professionals into the hands of consumers. No longer is genetic testing being carried out solely for medical reasons, by specialists in clinical genetics. Testing is now being used to empower consumers and can be used to shed new light on your distant ancestors, your close family and most of all, yourself' (23andMe). Such information can be shared with family and friends for fun', as part of the new recreational genomics'. Direct-to-consumer testing challenges many of the assumptions that underpin current practice surrounding genetic tests while at the same time exposing the deficiencies in the current regulatory frameworks to regulate this area. The purpose of this paper is to explore some of these issues, at a time when the science and the law are changing rapidly.", "publicationTitle": "Hum. Mol. Genet.", "publisher": "", "place": "", "date": "October 15, 2008", "volume": "", "issue": "", "section": "", "partNumber": "", "partTitle": "", "pages": "ddn253", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "", "DOI": "10.1093/hmg/ddn253", "citationKey": "", "url": "http://hmg.oxfordjournals.org/cgi/content/abstract/17/R2/R180", "accessDate": "2009-12-28T03:16:32Z", "PMID": "", "PMCID": "", "ISSN": "", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "", "libraryCatalog": "HighWire", "callNumber": "", "rights": "", "extra": "", "tags": [], "collections": [ "T87CUEAZ" ], "relations": {}, "dateAdded": "2009-12-28T03:16:32Z", "dateModified": "2009-12-28T03:16:32Z" } }, { "key": "VJBKTKWF", "version": 1, "library": { "type": "group", "id": 6535, "name": "DTCGenotyping", "links": { "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/6535/items/VJBKTKWF", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping/items/VJBKTKWF", "type": "text/html" } }, "meta": { "createdByUser": { "id": 77781, "username": "Iren25", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/iren25", "type": "text/html" } } }, "creatorSummary": "Brody", "parsedDate": "2009-09-01", "numChildren": 0 }, "data": { "key": "VJBKTKWF", "version": 1, "itemType": "newspaperArticle", "title": "Buyer Beware of Home DNA Tests", "creators": [ { "creatorType": "author", "firstName": "Jane E.", "lastName": "Brody" } ], "abstractNote": "", "publicationTitle": "The New York Times", "publisher": "", "place": "", "date": "September 1, 2009", "volume": "", "issue": "", "edition": "", "section": "Health", "pages": "", "ISSN": "0362-4331", "DOI": "", "citationKey": "", "url": "http://www.nytimes.com/2009/09/01/health/01brod.html", "accessDate": "2009-12-28T03:04:39Z", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "", "libraryCatalog": "NYTimes.com", "callNumber": "", "rights": "", "extra": "", "tags": [ { "tag": "DNA (Deoxyribonucleic Acid)", "type": 1 }, { "tag": "Genealogy", "type": 1 }, { "tag": "Genetics and Heredity", "type": 1 }, { "tag": "Medicine and Health", "type": 1 }, { "tag": "Tests and Testing", "type": 1 } ], "collections": [ "UR5DBF36" ], "relations": {}, "dateAdded": "2009-12-28T03:04:39Z", "dateModified": "2009-12-28T03:04:39Z" } }, { "key": "MHZHXRZM", "version": 1, "library": { "type": "group", "id": 6535, "name": "DTCGenotyping", "links": { "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/6535/items/MHZHXRZM", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/dtcgenotyping/items/MHZHXRZM", "type": "text/html" } }, "meta": { "createdByUser": { "id": 77781, "username": 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