Cross-jurisdictional Data Transfer in Health Research: Stakeholder Perceptions on the Role of Law
Large data-intensive health research programmes benefit from collaboration amongst researchers who may be located in different institutions and international contexts. However, complexities in navigating privacy frameworks and data protection laws across various jurisdictions pose significant challe...
Gespeichert in:
| Veröffentlicht in: | Asian bioethics review 2024-10, Vol.16 (4), p.663-682 |
|---|---|
| Hauptverfasser: | , , |
| Format: | Artikel |
| Sprache: | eng |
| Schlagworte: | |
| Online-Zugang: | Volltext |
| Tags: |
Tag hinzufügen
Keine Tags, Fügen Sie den ersten Tag hinzu!
|
| container_end_page | 682 |
|---|---|
| container_issue | 4 |
| container_start_page | 663 |
| container_title | Asian bioethics review |
| container_volume | 16 |
| creator | Chan, Hui Yun Toh, Hui Jin Lysaght, Tamra |
| description | Large data-intensive health research programmes benefit from collaboration amongst researchers who may be located in different institutions and international contexts. However, complexities in navigating privacy frameworks and data protection laws across various jurisdictions pose significant challenges to researchers seeking to share or transfer data outside of institutional boundaries. Research on the awareness of data protection and privacy laws amongst stakeholders is limited. Our qualitative study, drawn from a larger project in Singapore, revealed insights into stakeholders’ perceptions of the role of law in cross-national health data research. Stakeholders in our study demonstrated a range of perceptions regarding the role of data protection law in governing the collection and transfer of health data for research. The main criticisms included inadequate legal protection to data and lack of uniformed data protection standards. Despite these criticisms, participants recognised the importance of data protection law in supporting cross-border data transfers and proposed measures to improve perceived limitations of existing laws. These measures include strengthening existing legal framework, establishing contractual agreements and imposing severe punishments for data misuse. |
| doi_str_mv | 10.1007/s41649-024-00283-8 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_11464792</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>3116338116</sourcerecordid><originalsourceid>FETCH-LOGICAL-c426t-d074cc0596240ad15a412885a86e4c43971ce711faf6f7a0543b14a831ed67683</originalsourceid><addsrcrecordid>eNp9kU1v1DAQhq0KRKulf4ADstQLl4AdO_7oBaEtUKSVQKWcrakzabJk462dtOLf43S3hXLAkj2W5pnXnnkJecXZW86YfpckV9IWrJQFY6URhTkgR1xbUVhZiWf7u9GVPSTHKa1ZXjJvy16QQ2GFNbKyRwSWMaRUrKfYpbrzYxcG6OkZjEAvIwypwUi7gZ4j9GNLLzAhRN-e0u8j_MQ29HXOf8PocTuXJhoGOrZIL0KPNDR0BXcvyfMG-oTH-7ggPz59vFyeF6uvn78sP6wKL0s1FjXT0ntWWVVKBjWvQPLSmAqMQumlsJp71Jw30KhGA6ukuOISjOBYK62MWJD3O93tdLXB2uMwRujdNnYbiL9cgM49zQxd667DreNcKqltmRXe7BViuJkwjW7TJY99DwOGKTnBuRLCzOeCnPyDrsMU8-juqazHhRaZKneUn4ccsXn8DWdudtHtXHTZRXfvopv7eP13H48lD55lQOyAlFPDNcY_b_9H9jdJ5Kdg</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>3114641373</pqid></control><display><type>article</type><title>Cross-jurisdictional Data Transfer in Health Research: Stakeholder Perceptions on the Role of Law</title><source>Springer Nature - Complete Springer Journals</source><creator>Chan, Hui Yun ; Toh, Hui Jin ; Lysaght, Tamra</creator><creatorcontrib>Chan, Hui Yun ; Toh, Hui Jin ; Lysaght, Tamra</creatorcontrib><description>Large data-intensive health research programmes benefit from collaboration amongst researchers who may be located in different institutions and international contexts. However, complexities in navigating privacy frameworks and data protection laws across various jurisdictions pose significant challenges to researchers seeking to share or transfer data outside of institutional boundaries. Research on the awareness of data protection and privacy laws amongst stakeholders is limited. Our qualitative study, drawn from a larger project in Singapore, revealed insights into stakeholders’ perceptions of the role of law in cross-national health data research. Stakeholders in our study demonstrated a range of perceptions regarding the role of data protection law in governing the collection and transfer of health data for research. The main criticisms included inadequate legal protection to data and lack of uniformed data protection standards. Despite these criticisms, participants recognised the importance of data protection law in supporting cross-border data transfers and proposed measures to improve perceived limitations of existing laws. These measures include strengthening existing legal framework, establishing contractual agreements and imposing severe punishments for data misuse.</description><identifier>ISSN: 1793-8759</identifier><identifier>ISSN: 1793-9453</identifier><identifier>EISSN: 1793-9453</identifier><identifier>DOI: 10.1007/s41649-024-00283-8</identifier><identifier>PMID: 39398459</identifier><language>eng</language><publisher>Singapore: Springer Nature Singapore</publisher><subject>Bioethics ; Biomedicine ; Education ; Ethics ; Health Administration ; Law ; Medical Law ; Medical research ; Original Paper ; Philosophy ; Privacy ; Public Health</subject><ispartof>Asian bioethics review, 2024-10, Vol.16 (4), p.663-682</ispartof><rights>The Author(s) 2024</rights><rights>The Author(s) 2024.</rights><rights>The Author(s) 2024. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>The Author(s) 2024 2024</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c426t-d074cc0596240ad15a412885a86e4c43971ce711faf6f7a0543b14a831ed67683</cites><orcidid>0000-0001-6084-0261</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s41649-024-00283-8$$EPDF$$P50$$Gspringer$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s41649-024-00283-8$$EHTML$$P50$$Gspringer$$Hfree_for_read</linktohtml><link.rule.ids>230,314,777,781,882,27905,27906,41469,42538,51300</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/39398459$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Chan, Hui Yun</creatorcontrib><creatorcontrib>Toh, Hui Jin</creatorcontrib><creatorcontrib>Lysaght, Tamra</creatorcontrib><title>Cross-jurisdictional Data Transfer in Health Research: Stakeholder Perceptions on the Role of Law</title><title>Asian bioethics review</title><addtitle>ABR</addtitle><addtitle>Asian Bioeth Rev</addtitle><description>Large data-intensive health research programmes benefit from collaboration amongst researchers who may be located in different institutions and international contexts. However, complexities in navigating privacy frameworks and data protection laws across various jurisdictions pose significant challenges to researchers seeking to share or transfer data outside of institutional boundaries. Research on the awareness of data protection and privacy laws amongst stakeholders is limited. Our qualitative study, drawn from a larger project in Singapore, revealed insights into stakeholders’ perceptions of the role of law in cross-national health data research. Stakeholders in our study demonstrated a range of perceptions regarding the role of data protection law in governing the collection and transfer of health data for research. The main criticisms included inadequate legal protection to data and lack of uniformed data protection standards. Despite these criticisms, participants recognised the importance of data protection law in supporting cross-border data transfers and proposed measures to improve perceived limitations of existing laws. These measures include strengthening existing legal framework, establishing contractual agreements and imposing severe punishments for data misuse.</description><subject>Bioethics</subject><subject>Biomedicine</subject><subject>Education</subject><subject>Ethics</subject><subject>Health Administration</subject><subject>Law</subject><subject>Medical Law</subject><subject>Medical research</subject><subject>Original Paper</subject><subject>Philosophy</subject><subject>Privacy</subject><subject>Public Health</subject><issn>1793-8759</issn><issn>1793-9453</issn><issn>1793-9453</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2024</creationdate><recordtype>article</recordtype><sourceid>C6C</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><recordid>eNp9kU1v1DAQhq0KRKulf4ADstQLl4AdO_7oBaEtUKSVQKWcrakzabJk462dtOLf43S3hXLAkj2W5pnXnnkJecXZW86YfpckV9IWrJQFY6URhTkgR1xbUVhZiWf7u9GVPSTHKa1ZXjJvy16QQ2GFNbKyRwSWMaRUrKfYpbrzYxcG6OkZjEAvIwypwUi7gZ4j9GNLLzAhRN-e0u8j_MQ29HXOf8PocTuXJhoGOrZIL0KPNDR0BXcvyfMG-oTH-7ggPz59vFyeF6uvn78sP6wKL0s1FjXT0ntWWVVKBjWvQPLSmAqMQumlsJp71Jw30KhGA6ukuOISjOBYK62MWJD3O93tdLXB2uMwRujdNnYbiL9cgM49zQxd667DreNcKqltmRXe7BViuJkwjW7TJY99DwOGKTnBuRLCzOeCnPyDrsMU8-juqazHhRaZKneUn4ccsXn8DWdudtHtXHTZRXfvopv7eP13H48lD55lQOyAlFPDNcY_b_9H9jdJ5Kdg</recordid><startdate>20241001</startdate><enddate>20241001</enddate><creator>Chan, Hui Yun</creator><creator>Toh, Hui Jin</creator><creator>Lysaght, Tamra</creator><general>Springer Nature Singapore</general><general>Springer Nature B.V</general><scope>C6C</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7X7</scope><scope>7XB</scope><scope>88C</scope><scope>8FE</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>BVBZV</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>HCIFZ</scope><scope>K9.</scope><scope>LK8</scope><scope>M0S</scope><scope>M0T</scope><scope>M7P</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0001-6084-0261</orcidid></search><sort><creationdate>20241001</creationdate><title>Cross-jurisdictional Data Transfer in Health Research: Stakeholder Perceptions on the Role of Law</title><author>Chan, Hui Yun ; Toh, Hui Jin ; Lysaght, Tamra</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c426t-d074cc0596240ad15a412885a86e4c43971ce711faf6f7a0543b14a831ed67683</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2024</creationdate><topic>Bioethics</topic><topic>Biomedicine</topic><topic>Education</topic><topic>Ethics</topic><topic>Health Administration</topic><topic>Law</topic><topic>Medical Law</topic><topic>Medical research</topic><topic>Original Paper</topic><topic>Philosophy</topic><topic>Privacy</topic><topic>Public Health</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Chan, Hui Yun</creatorcontrib><creatorcontrib>Toh, Hui Jin</creatorcontrib><creatorcontrib>Lysaght, Tamra</creatorcontrib><collection>Springer Nature OA Free Journals</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>ProQuest Health and Medical</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Healthcare Administration Database (Alumni)</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>ProQuest Central (Alumni)</collection><collection>ProQuest Central</collection><collection>ProQuest Central Essentials</collection><collection>Biological Science Collection</collection><collection>AUTh Library subscriptions: ProQuest Central</collection><collection>ProQuest Natural Science Collection</collection><collection>East & South Asia Database</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</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>Healthcare Administration Database</collection><collection>ProQuest Biological Science Journals</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>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Asian bioethics review</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Chan, Hui Yun</au><au>Toh, Hui Jin</au><au>Lysaght, Tamra</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Cross-jurisdictional Data Transfer in Health Research: Stakeholder Perceptions on the Role of Law</atitle><jtitle>Asian bioethics review</jtitle><stitle>ABR</stitle><addtitle>Asian Bioeth Rev</addtitle><date>2024-10-01</date><risdate>2024</risdate><volume>16</volume><issue>4</issue><spage>663</spage><epage>682</epage><pages>663-682</pages><issn>1793-8759</issn><issn>1793-9453</issn><eissn>1793-9453</eissn><abstract>Large data-intensive health research programmes benefit from collaboration amongst researchers who may be located in different institutions and international contexts. However, complexities in navigating privacy frameworks and data protection laws across various jurisdictions pose significant challenges to researchers seeking to share or transfer data outside of institutional boundaries. Research on the awareness of data protection and privacy laws amongst stakeholders is limited. Our qualitative study, drawn from a larger project in Singapore, revealed insights into stakeholders’ perceptions of the role of law in cross-national health data research. Stakeholders in our study demonstrated a range of perceptions regarding the role of data protection law in governing the collection and transfer of health data for research. The main criticisms included inadequate legal protection to data and lack of uniformed data protection standards. Despite these criticisms, participants recognised the importance of data protection law in supporting cross-border data transfers and proposed measures to improve perceived limitations of existing laws. These measures include strengthening existing legal framework, establishing contractual agreements and imposing severe punishments for data misuse.</abstract><cop>Singapore</cop><pub>Springer Nature Singapore</pub><pmid>39398459</pmid><doi>10.1007/s41649-024-00283-8</doi><tpages>20</tpages><orcidid>https://orcid.org/0000-0001-6084-0261</orcidid><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1793-8759 |
| ispartof | Asian bioethics review, 2024-10, Vol.16 (4), p.663-682 |
| issn | 1793-8759 1793-9453 1793-9453 |
| language | eng |
| recordid | cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_11464792 |
| source | Springer Nature - Complete Springer Journals |
| subjects | Bioethics Biomedicine Education Ethics Health Administration Law Medical Law Medical research Original Paper Philosophy Privacy Public Health |
| title | Cross-jurisdictional Data Transfer in Health Research: Stakeholder Perceptions on the Role of Law |
| url | https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-01-17T14%3A29%3A20IST&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=Cross-jurisdictional%20Data%20Transfer%20in%20Health%20Research:%20Stakeholder%20Perceptions%20on%20the%20Role%20of%20Law&rft.jtitle=Asian%20bioethics%20review&rft.au=Chan,%20Hui%20Yun&rft.date=2024-10-01&rft.volume=16&rft.issue=4&rft.spage=663&rft.epage=682&rft.pages=663-682&rft.issn=1793-8759&rft.eissn=1793-9453&rft_id=info:doi/10.1007/s41649-024-00283-8&rft_dat=%3Cproquest_pubme%3E3116338116%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=3114641373&rft_id=info:pmid/39398459&rfr_iscdi=true |