A Survey of the SWISS Researchers on the Impact of Sibling Privacy Protections on Pedigree Recruitment
To understand the perceptions and attitudes about privacy safeguardsin researchand investigate the impact of letter-based proband-initiated contact on recruitment, we surveyed researchers in the Siblings With Ischemic Stroke Study (SWISS). All 49 actively recruiting sites provided at least 1 respons...
Gespeichert in:
| Veröffentlicht in: | Neuroepidemiology 2005-01, Vol.25 (1), p.32-41 |
|---|---|
| Hauptverfasser: | , , , , |
| Format: | Artikel |
| Sprache: | eng |
| Schlagworte: | |
| Online-Zugang: | Volltext |
| Tags: |
Tag hinzufügen
Keine Tags, Fügen Sie den ersten Tag hinzu!
|
| container_end_page | 41 |
|---|---|
| container_issue | 1 |
| container_start_page | 32 |
| container_title | Neuroepidemiology |
| container_volume | 25 |
| creator | Worrall, Bradford B. Chen, Donna T. Brown Jr, Robert D. Brott, Thomas G. Meschia, James F. |
| description | To understand the perceptions and attitudes about privacy safeguardsin researchand investigate the impact of letter-based proband-initiated contact on recruitment, we surveyed researchers in the Siblings With Ischemic Stroke Study (SWISS). All 49 actively recruiting sites provided at least 1 response, and 61% reported that potential probands were enthusiastic. Although 66% of researchers valued proband-initiated contact, only 23% said that probands viewed this strategy as important to protecting the privacy of siblings. A substantial minority of researchers (37%) said the strategy impeded enrollment, and 44% said it was overly burdensome to probands. |
| doi_str_mv | 10.1159/000085311 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_1713215</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>853115711</sourcerecordid><originalsourceid>FETCH-LOGICAL-c420t-c9e9868fddc49fd3f402fc327cd7a03247d78820e244d915d04903ff12cc2e6e3</originalsourceid><addsrcrecordid>eNpd0c9rFDEUB_Agil2rB8-CDD0IHqbm505yEUppdaHQ4igeQ5q87KbOTNZkZmH_-2a7y_ojl3d4n3zzwkPoLcHnhAj1CZcjBSPkGZoRTlmNKZbP0QxTQWrBBD5Br3J-wLhgqV6iEyKkEBKzGfIXVTulDWyr6KtxBVX7c9G21TfIYJJdQcpVHJ4ai35t7LhjbbjvwrCs7lLYGLstNY5gxxCHJ3wHLiwTQAmxaQpjD8P4Gr3wpsvw5lBP0Y_rq--XX-ub2y-Ly4ub2nKKx9oqUHIuvXOWK--Y55h6y2hjXWMwo7xxjZQUA-XcKSIc5goz7wm1lsIc2Cn6vM9dT_c9OFueTqbT6xR6k7Y6mqD_7QxhpZdxo0lDGCWiBHw4BKT4e4I86j5kC11nBohT1vNGEamIKvDsP_gQpzSUz2nKqGo4aXbo4x7ZFHNO4I-TEKx3q9PH1RX7_u_R_8jDrgp4twe_TFpCOoL99UezCZyq</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>232974179</pqid></control><display><type>article</type><title>A Survey of the SWISS Researchers on the Impact of Sibling Privacy Protections on Pedigree Recruitment</title><source>Karger Journals</source><source>MEDLINE</source><creator>Worrall, Bradford B. ; Chen, Donna T. ; Brown Jr, Robert D. ; Brott, Thomas G. ; Meschia, James F.</creator><creatorcontrib>Worrall, Bradford B. ; Chen, Donna T. ; Brown Jr, Robert D. ; Brott, Thomas G. ; Meschia, James F. ; SWISS</creatorcontrib><description>To understand the perceptions and attitudes about privacy safeguardsin researchand investigate the impact of letter-based proband-initiated contact on recruitment, we surveyed researchers in the Siblings With Ischemic Stroke Study (SWISS). All 49 actively recruiting sites provided at least 1 response, and 61% reported that potential probands were enthusiastic. Although 66% of researchers valued proband-initiated contact, only 23% said that probands viewed this strategy as important to protecting the privacy of siblings. A substantial minority of researchers (37%) said the strategy impeded enrollment, and 44% said it was overly burdensome to probands.</description><identifier>ISSN: 0251-5350</identifier><identifier>EISSN: 1423-0208</identifier><identifier>DOI: 10.1159/000085311</identifier><identifier>PMID: 15855803</identifier><language>eng</language><publisher>Basel, Switzerland: S. Karger AG</publisher><subject>Attitude of Health Personnel ; Bioethics ; Brain Ischemia - genetics ; Canada ; Genetic Privacy - psychology ; Humans ; Original Paper ; Patient Selection ; Pedigree ; Research Personnel - psychology ; Siblings ; Stroke - genetics ; United States</subject><ispartof>Neuroepidemiology, 2005-01, Vol.25 (1), p.32-41</ispartof><rights>2005 S. Karger AG, Basel</rights><rights>Copyright (c) 2005 S. Karger AG, Basel</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c420t-c9e9868fddc49fd3f402fc327cd7a03247d78820e244d915d04903ff12cc2e6e3</citedby><cites>FETCH-LOGICAL-c420t-c9e9868fddc49fd3f402fc327cd7a03247d78820e244d915d04903ff12cc2e6e3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>230,314,776,780,881,2423,27901,27902</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/15855803$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Worrall, Bradford B.</creatorcontrib><creatorcontrib>Chen, Donna T.</creatorcontrib><creatorcontrib>Brown Jr, Robert D.</creatorcontrib><creatorcontrib>Brott, Thomas G.</creatorcontrib><creatorcontrib>Meschia, James F.</creatorcontrib><creatorcontrib>SWISS</creatorcontrib><title>A Survey of the SWISS Researchers on the Impact of Sibling Privacy Protections on Pedigree Recruitment</title><title>Neuroepidemiology</title><addtitle>Neuroepidemiology</addtitle><description>To understand the perceptions and attitudes about privacy safeguardsin researchand investigate the impact of letter-based proband-initiated contact on recruitment, we surveyed researchers in the Siblings With Ischemic Stroke Study (SWISS). All 49 actively recruiting sites provided at least 1 response, and 61% reported that potential probands were enthusiastic. Although 66% of researchers valued proband-initiated contact, only 23% said that probands viewed this strategy as important to protecting the privacy of siblings. A substantial minority of researchers (37%) said the strategy impeded enrollment, and 44% said it was overly burdensome to probands.</description><subject>Attitude of Health Personnel</subject><subject>Bioethics</subject><subject>Brain Ischemia - genetics</subject><subject>Canada</subject><subject>Genetic Privacy - psychology</subject><subject>Humans</subject><subject>Original Paper</subject><subject>Patient Selection</subject><subject>Pedigree</subject><subject>Research Personnel - psychology</subject><subject>Siblings</subject><subject>Stroke - genetics</subject><subject>United States</subject><issn>0251-5350</issn><issn>1423-0208</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2005</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>BENPR</sourceid><recordid>eNpd0c9rFDEUB_Agil2rB8-CDD0IHqbm505yEUppdaHQ4igeQ5q87KbOTNZkZmH_-2a7y_ojl3d4n3zzwkPoLcHnhAj1CZcjBSPkGZoRTlmNKZbP0QxTQWrBBD5Br3J-wLhgqV6iEyKkEBKzGfIXVTulDWyr6KtxBVX7c9G21TfIYJJdQcpVHJ4ai35t7LhjbbjvwrCs7lLYGLstNY5gxxCHJ3wHLiwTQAmxaQpjD8P4Gr3wpsvw5lBP0Y_rq--XX-ub2y-Ly4ub2nKKx9oqUHIuvXOWK--Y55h6y2hjXWMwo7xxjZQUA-XcKSIc5goz7wm1lsIc2Cn6vM9dT_c9OFueTqbT6xR6k7Y6mqD_7QxhpZdxo0lDGCWiBHw4BKT4e4I86j5kC11nBohT1vNGEamIKvDsP_gQpzSUz2nKqGo4aXbo4x7ZFHNO4I-TEKx3q9PH1RX7_u_R_8jDrgp4twe_TFpCOoL99UezCZyq</recordid><startdate>20050101</startdate><enddate>20050101</enddate><creator>Worrall, Bradford B.</creator><creator>Chen, Donna T.</creator><creator>Brown Jr, Robert D.</creator><creator>Brott, Thomas G.</creator><creator>Meschia, James F.</creator><general>S. Karger AG</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7TK</scope><scope>7U7</scope><scope>7U9</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88G</scope><scope>88I</scope><scope>8AF</scope><scope>8AO</scope><scope>8C1</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>C1K</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>H94</scope><scope>HCIFZ</scope><scope>K9.</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>M2P</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>S0X</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20050101</creationdate><title>A Survey of the SWISS Researchers on the Impact of Sibling Privacy Protections on Pedigree Recruitment</title><author>Worrall, Bradford B. ; Chen, Donna T. ; Brown Jr, Robert D. ; Brott, Thomas G. ; Meschia, James F.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c420t-c9e9868fddc49fd3f402fc327cd7a03247d78820e244d915d04903ff12cc2e6e3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2005</creationdate><topic>Attitude of Health Personnel</topic><topic>Bioethics</topic><topic>Brain Ischemia - genetics</topic><topic>Canada</topic><topic>Genetic Privacy - psychology</topic><topic>Humans</topic><topic>Original Paper</topic><topic>Patient Selection</topic><topic>Pedigree</topic><topic>Research Personnel - psychology</topic><topic>Siblings</topic><topic>Stroke - genetics</topic><topic>United States</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Worrall, Bradford B.</creatorcontrib><creatorcontrib>Chen, Donna T.</creatorcontrib><creatorcontrib>Brown Jr, Robert D.</creatorcontrib><creatorcontrib>Brott, Thomas G.</creatorcontrib><creatorcontrib>Meschia, James F.</creatorcontrib><creatorcontrib>SWISS</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>Neurosciences Abstracts</collection><collection>Toxicology Abstracts</collection><collection>Virology and AIDS Abstracts</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Psychology Database (Alumni)</collection><collection>Science Database (Alumni Edition)</collection><collection>STEM Database</collection><collection>ProQuest Pharma Collection</collection><collection>Public Health Database</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>Environmental Sciences and Pollution Management</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>SciTech Premium Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Psychology Database</collection><collection>Science Database</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 China</collection><collection>ProQuest One Psychology</collection><collection>ProQuest Central Basic</collection><collection>SIRS Editorial</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Neuroepidemiology</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Worrall, Bradford B.</au><au>Chen, Donna T.</au><au>Brown Jr, Robert D.</au><au>Brott, Thomas G.</au><au>Meschia, James F.</au><aucorp>SWISS</aucorp><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>A Survey of the SWISS Researchers on the Impact of Sibling Privacy Protections on Pedigree Recruitment</atitle><jtitle>Neuroepidemiology</jtitle><addtitle>Neuroepidemiology</addtitle><date>2005-01-01</date><risdate>2005</risdate><volume>25</volume><issue>1</issue><spage>32</spage><epage>41</epage><pages>32-41</pages><issn>0251-5350</issn><eissn>1423-0208</eissn><abstract>To understand the perceptions and attitudes about privacy safeguardsin researchand investigate the impact of letter-based proband-initiated contact on recruitment, we surveyed researchers in the Siblings With Ischemic Stroke Study (SWISS). All 49 actively recruiting sites provided at least 1 response, and 61% reported that potential probands were enthusiastic. Although 66% of researchers valued proband-initiated contact, only 23% said that probands viewed this strategy as important to protecting the privacy of siblings. A substantial minority of researchers (37%) said the strategy impeded enrollment, and 44% said it was overly burdensome to probands.</abstract><cop>Basel, Switzerland</cop><pub>S. Karger AG</pub><pmid>15855803</pmid><doi>10.1159/000085311</doi><tpages>10</tpages><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0251-5350 |
| ispartof | Neuroepidemiology, 2005-01, Vol.25 (1), p.32-41 |
| issn | 0251-5350 1423-0208 |
| language | eng |
| recordid | cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_1713215 |
| source | Karger Journals; MEDLINE |
| subjects | Attitude of Health Personnel Bioethics Brain Ischemia - genetics Canada Genetic Privacy - psychology Humans Original Paper Patient Selection Pedigree Research Personnel - psychology Siblings Stroke - genetics United States |
| title | A Survey of the SWISS Researchers on the Impact of Sibling Privacy Protections on Pedigree Recruitment |
| url | https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-02-12T16%3A36%3A30IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-proquest_pubme&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=A%20Survey%20of%20the%20SWISS%20Researchers%20on%20the%20Impact%20of%20Sibling%20Privacy%20Protections%20on%20Pedigree%20Recruitment&rft.jtitle=Neuroepidemiology&rft.au=Worrall,%20Bradford%20B.&rft.aucorp=SWISS&rft.date=2005-01-01&rft.volume=25&rft.issue=1&rft.spage=32&rft.epage=41&rft.pages=32-41&rft.issn=0251-5350&rft.eissn=1423-0208&rft_id=info:doi/10.1159/000085311&rft_dat=%3Cproquest_pubme%3E853115711%3C/proquest_pubme%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_pqid=232974179&rft_id=info:pmid/15855803&rfr_iscdi=true |