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"id": 331687, "name": "Gems104", "links": { "alternate": { "href": "https://www.zotero.org/groups/gems104", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/331687/items/N84N25RN", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/gems104/items/N84N25RN", "type": "text/html" } }, "meta": { "createdByUser": { "id": 2347384, "username": "JiChang", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/jichang", "type": "text/html" } } }, "creatorSummary": "Roth", "parsedDate": "2010-05-01", "numChildren": 2 }, "data": { "key": "N84N25RN", "version": 144, "itemType": "journalArticle", "title": "Database-driven investigations", "creators": [ { "creatorType": "author", "firstName": "Andrea", "lastName": "Roth" } ], "abstractNote": "", "publicationTitle": "Criminology & Public Policy", "publisher": "", "place": "", "date": "May 1, 2010", "volume": "9", "issue": "2", "section": "", "partNumber": "", "partTitle": "", "pages": "421-428", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "", "DOI": "10.1111/j.1745-9133.2010.00638.x", "citationKey": "", "url": "http://onlinelibrary.wiley.com/doi/10.1111/j.1745-9133.2010.00638.x/abstract", "accessDate": "2015-03-01T21:08:54Z", "PMID": "", "PMCID": "", "ISSN": "1745-9133", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "en", "libraryCatalog": "Wiley Online Library", "callNumber": "", "rights": "© 2010 by the American Society of Criminology", "extra": "", "tags": [], "collections": [ "UWQ8KDER" ], "relations": {}, "dateAdded": "2015-03-26T01:28:17Z", "dateModified": "2015-03-26T01:28:17Z" } }, { "key": "U4BNPMPZ", "version": 144, "library": { "type": "group", "id": 331687, "name": "Gems104", "links": { "alternate": { "href": "https://www.zotero.org/groups/gems104", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/331687/items/U4BNPMPZ", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/gems104/items/U4BNPMPZ", "type": "text/html" } }, "meta": { "createdByUser": { "id": 2347384, "username": "JiChang", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/jichang", "type": "text/html" } } }, "creatorSummary": "Silva and Machado", "parsedDate": "2009-06", "numChildren": 1 }, "data": { "key": "U4BNPMPZ", "version": 144, "itemType": "journalArticle", "title": "Trust, morality and altruism in the donation of biological material: the case of Portugal", "creators": [ { "creatorType": "author", "firstName": "Susana", "lastName": "Silva" }, { "creatorType": "author", "firstName": "Helena", "lastName": "Machado" } ], "abstractNote": "This paper examines a number of social, ethical and cultural issues related to the application of biotechnology. The focus of the paper relies on two different cases of governing biotechnology in Portugal, referring to donation of biological material: the act of donation of eggs and sperm; and volunteers for donation of DNA material for the forensic national DNA database. We analyze the discourses on donation of biological material framing them in rhetorical devices of gift, altruism, informed consent and social responsibility. This comes blended with still unclear and emergent regulation and policies of access, retention, preservation and governing of biological material and of donors' identification. The risks are mitigated by narratives of science and technology as social progress and providers of public good and health benefits, as well as by underlining the individual responsibility in this domain and by reinforcing the rhetoric of gene quality, based on socio-cultural and bio-genetic criteria.", "publicationTitle": "New Genetics & Society", "publisher": "", "place": "", "date": "June 2009", "volume": "28", "issue": "2", "section": "", "partNumber": "", "partTitle": "", "pages": "103-118", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "New Genetics & Society", "DOI": "10.1080/14636770902901413", "citationKey": "", "url": "http://search.ebscohost.com/login.aspx?direct=true&db=aph&AN=40626998&login.asp&site=ehost-live", "accessDate": "2015-02-27T22:40:31Z", "PMID": "", "PMCID": "", "ISSN": "14636778", "archive": "", "archiveLocation": "", "shortTitle": "Trust, morality and altruism in the donation of biological material", "language": "", "libraryCatalog": "EBSCOhost", "callNumber": "", "rights": "", "extra": "", "tags": [ { "tag": "ALTRUISM", "type": 1 }, { "tag": "BIOETHICS", "type": 1 }, { "tag": "BIOTECHNOLOGY ethics", "type": 1 }, { "tag": "DNA fingerprinting -- Law & legislation", "type": 1 }, { "tag": "MORAL & ethical aspects", "type": 1 }, { "tag": "PORTUGAL", "type": 1 }, { "tag": "REPRODUCTIVE technology", "type": 1 }, { "tag": "RESEARCH", "type": 1 }, { "tag": "donation of human biological material", "type": 1 }, { "tag": "quality and safety", "type": 1 } ], "collections": [ "UWQ8KDER" ], "relations": {}, "dateAdded": "2015-03-26T01:28:17Z", "dateModified": "2015-03-26T01:28:17Z" } }, { "key": "XAQZ3QHS", "version": 144, "library": { "type": "group", "id": 331687, "name": "Gems104", "links": { "alternate": { "href": "https://www.zotero.org/groups/gems104", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/331687/items/XAQZ3QHS", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/gems104/items/XAQZ3QHS", "type": "text/html" } }, "meta": { "createdByUser": { "id": 2347384, "username": "JiChang", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/jichang", "type": "text/html" } } }, "creatorSummary": "Ballou et al.", "parsedDate": "2013", "numChildren": 0 }, "data": { "key": "XAQZ3QHS", "version": 144, "itemType": "report", "title": "The biological evidence preservation handbook : best practices for evidence handlers ; technical working group on biological evidence preservation", "creators": [ { "creatorType": "author", "firstName": "Susan", "lastName": "Ballou" }, { "creatorType": "author", "firstName": "Mark", "lastName": "Stolorow" }, { "creatorType": "author", "firstName": "Melissa", "lastName": "Taylor" }, { "creatorType": "author", "firstName": "Phylis S.", "lastName": "Bamberger" }, { "creatorType": "author", "firstName": "Larry", "lastName": "Brown" }, { "creatorType": "author", "firstName": "Rebecca", "lastName": "Brown" }, { "creatorType": "author", "firstName": "Yvette", "lastName": "Burney" }, { "creatorType": "author", "firstName": "Dennis", "lastName": "Davenport" }, { "creatorType": "author", "firstName": "Linsday", "lastName": "DePalma" }, { "creatorType": "author", "firstName": "Shannan", "lastName": "Williams" }, { "creatorType": "author", "firstName": "Cynthia", "lastName": "Jones" }, { "creatorType": "author", "firstName": "Ralph", "lastName": "Keaton" }, { "creatorType": "author", "firstName": "William", "lastName": "Kiley" }, { "creatorType": "author", "firstName": "Joseph", "lastName": "Latta" }, { "creatorType": "author", "firstName": "Margaret", "lastName": "Kline" }, { "creatorType": "author", "firstName": "Karen", "lastName": "Lanning" }, { "creatorType": "author", "firstName": "Gerry", "lastName": "LaPorte" }, { "creatorType": "author", "firstName": "Linda E.", "lastName": "Ledray" }, { "creatorType": "author", "firstName": "Randy", "lastName": "Nagy" }, { "creatorType": "author", "firstName": "Brian E.", "lastName": "Ostrom" }, { "creatorType": "author", "firstName": "Lisa", "lastName": "Schwind" }, { "creatorType": "author", "firstName": "Stephanie", "lastName": "Stoiloff" } ], "abstractNote": "", "reportNumber": "NIST IR 7928", "reportType": "", "institution": "National Institute of Standards and Technology", "place": "", "date": "04/2013", "seriesTitle": "", "seriesNumber": "", "pages": "", "DOI": "", "ISBN": "", "citationKey": "", "url": "http://nvlpubs.nist.gov/nistpubs/ir/2013/NIST.IR.7928.pdf", "accessDate": "2015-02-27T22:23:31Z", "ISSN": "", "archive": "", "archiveLocation": "", "shortTitle": "The biological evidence preservation handbook", "language": "", "libraryCatalog": "CrossRef", "callNumber": "", "rights": "", "extra": "", "tags": [], "collections": [ "UWQ8KDER" ], "relations": {}, "dateAdded": "2015-03-26T01:28:17Z", "dateModified": "2015-03-26T01:28:17Z" } }, { "key": "47CES52N", "version": 144, "library": { "type": "group", "id": 331687, "name": "Gems104", "links": { "alternate": { "href": "https://www.zotero.org/groups/gems104", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/331687/items/47CES52N", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/gems104/items/47CES52N", "type": "text/html" } }, "meta": { "createdByUser": { "id": 2347384, "username": "JiChang", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/jichang", "type": "text/html" } } }, "creatorSummary": "Vaithilingam et al.", "parsedDate": "2015-01", "numChildren": 1 }, "data": { "key": "47CES52N", "version": 144, "itemType": "journalArticle", "title": "Establishing and managing a periodontal biobank for research: the sharing of experience", "creators": [ { "creatorType": "author", "firstName": "Rd", "lastName": "Vaithilingam" }, { "creatorType": "author", "firstName": "Sh", "lastName": "Safii" }, { "creatorType": "author", "firstName": "Na", "lastName": "Baharuddin" }, { "creatorType": "author", "firstName": "Lp", "lastName": "Karen-Ng" }, { "creatorType": "author", "firstName": "R", "lastName": "Saub" }, { "creatorType": "author", "firstName": "F", "lastName": "Ariffin" }, { "creatorType": "author", "firstName": "H", "lastName": "Ramli" }, { "creatorType": "author", "firstName": "A", "lastName": "Sharifuddin" }, { "creatorType": "author", "firstName": "Mfh", "lastName": "Hidayat" }, { "creatorType": "author", "firstName": "R", "lastName": "Raman" }, { "creatorType": "author", "firstName": "Yk", "lastName": "Chan" }, { "creatorType": "author", "firstName": "Na", "lastName": "Rani" }, { "creatorType": "author", "firstName": "Ra", "lastName": "Rahim" }, { "creatorType": "author", "firstName": "N", "lastName": "Shahruddin" }, { "creatorType": "author", "firstName": "Sc", "lastName": "Cheong" }, { "creatorType": "author", "firstName": "Pm", "lastName": "Bartold" }, { "creatorType": "author", "firstName": "Rb", "lastName": "Zain" } ], "abstractNote": "Periodontal bio-repositories, which allow banking of clinically validated human data and biological samples, provide an opportunity to derive biomarkers for periodontal diagnosis, prognosis and therapeutic activities which are expected to improve patient management. This article presents the establishing of the Malaysian Periodontal Database and Biobank System ( MPDBS) which was initiated in 2011 with the aim to facilitate periodontal research. Partnerships were established with collaborating centres. Policies on specimen access, authorship and acknowledgement policies were agreed upon by all participating centres before the initiation of the periodontal biobank. Ethical approval for the collection of samples and data were obtained from institutional ethics review boards. A broad-based approach for informed consent was used, which covered areas related to quality of life impacts, genetics and molecular aspects of periodontal disease. Sample collection and processing was performed using a standardized protocol. Biobanking resources such as equipment and freezers were shared with the Malaysian Oral Cancer Database and Tissue Bank System ( MOCDTBS). In the development of the MPDBS, challenges that were previously faced by the MOCDTBS were considered. Future challenges in terms of ethical and legal issues will be faced when international collaborations necessitate the transportation of specimens across borders.", "publicationTitle": "Oral Diseases", "publisher": "", "place": "", "date": "January 2015", "volume": "21", "issue": "1", "section": "", "partNumber": "", "partTitle": "", "pages": "e62-e69", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "Oral Diseases", "DOI": "10.1111/odi.12267", "citationKey": "", "url": "", "accessDate": "", "PMID": "", "PMCID": "", "ISSN": "1354523X", "archive": "", "archiveLocation": "", "shortTitle": "Establishing and managing a periodontal biobank for research", "language": "", "libraryCatalog": "EBSCOhost", "callNumber": "", "rights": "", "extra": "", "tags": [ { "tag": "BIOCHEMICAL markers", "type": 1 }, { "tag": "DATABASE design", "type": 1 }, { "tag": "DATABASES", "type": 1 }, { "tag": "DIAGNOSIS", "type": 1 }, { "tag": "MALAYSIA", "type": 1 }, { "tag": "PERIODONTITIS", "type": 1 }, { "tag": "biobanking", "type": 1 }, { "tag": "confidentiality", "type": 1 }, { "tag": "partnerships", "type": 1 }, { "tag": "specimen access", "type": 1 } ], "collections": [ "UWQ8KDER" ], "relations": {}, "dateAdded": "2015-03-26T01:28:17Z", "dateModified": "2015-03-26T01:28:17Z" } }, { "key": "D6X2ZWTW", "version": 148, "library": { "type": "group", "id": 331687, "name": "Gems104", "links": { "alternate": { "href": "https://www.zotero.org/groups/gems104", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/331687/items/D6X2ZWTW", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/gems104/items/D6X2ZWTW", "type": "text/html" } }, "meta": { "createdByUser": { "id": 2345189, "username": "Adam Ferrick", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/adam_ferrick", "type": "text/html" } } }, "creatorSummary": "Sobel", "parsedDate": "2007-07-08", "numChildren": 2 }, "data": { "key": "D6X2ZWTW", "version": 148, "itemType": "journalArticle", "title": "The HIPAA PARADOX: The Privacy Rule That's Not", "creators": [ { "creatorType": "author", "firstName": "Richard", "lastName": "Sobel" } ], "abstractNote": "HIPAA is often described as a privacy rule. It is not. In fact, HIPAA is a disclosure regulation, and it has effectively dismantled the longstanding moral and legal tradition of patient confidentiality. By permitting broad and easy dissemination of patients' medical information, with no audit trails for most disclosures, it has undermined both medical ethics and the effectiveness of medical care.", "publicationTitle": "Hastings Center Report", "publisher": "", "place": "", "date": "July 8, 2007", "volume": "37", "issue": "4", "section": "", "partNumber": "", "partTitle": "", "pages": "40-50", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "", "DOI": "10.1353/hcr.2007.0062", "citationKey": "", "url": "http://onlinelibrary.wiley.com/doi/10.1353/hcr.2007.0062/abstract", "accessDate": "2015-02-28T22:31:58Z", "PMID": "", "PMCID": "", "ISSN": "1552-146X", "archive": "", "archiveLocation": "", "shortTitle": "The HIPAA PARADOX", "language": "en", "libraryCatalog": "Wiley Online Library", "callNumber": "", "rights": "2007 The Hastings Center", "extra": "", "tags": [], "collections": [ "VUURMCZ4" ], "relations": {}, "dateAdded": "2015-02-28T22:31:58Z", "dateModified": "2015-03-11T22:12:19Z" } }, { "key": "P2BZ5RMR", "version": 141, "library": { "type": "group", "id": 331687, "name": "Gems104", "links": { "alternate": { "href": "https://www.zotero.org/groups/gems104", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/331687/items/P2BZ5RMR", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/gems104/items/P2BZ5RMR", "type": "text/html" }, "up": { "href": "https://api.zotero.org/groups/331687/items/BS4U58D9", "type": "application/json" } }, "meta": { "createdByUser": { "id": 2347386, "username": "ttran612", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/ttran612", "type": "text/html" } } }, "numChildren": 0 }, "data": { "key": "P2BZ5RMR", "version": 141, "parentItem": "BS4U58D9", "itemType": "attachment", "linkMode": "imported_url", "title": "JSTOR Full Text PDF", "accessDate": "2015-03-03T23:08:56Z", "url": "http://www.jstor.org/stable/pdfplus/10.2307/29746480.pdf?acceptTC=true", "note": "", "contentType": "application/pdf", "charset": "", "filename": "Brous - 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However, based on an analysis of the relevant legal cases up to World War I, the professional secrecy of German doctors was increasingly challenged by an ethos that put public interests before patient privacy. This development became particularly tangible in cases of venereal disease, or when interests of the state in criminal prosecution were involved. 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