Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada
Introduction Research using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recogni...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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Swansea University
2019-05-01
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| Series: | International Journal of Population Data Science |
| Subjects: | |
| Online Access: | https://ijpds.org/article/view/1103 |
| _version_ | 1797428794623000576 |
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| author | Jack Teng Colene Bentley Michael M Burgess Kieran C O'Doherty Kimberlyn M McGrail |
| author_facet | Jack Teng Colene Bentley Michael M Burgess Kieran C O'Doherty Kimberlyn M McGrail |
| author_sort | Jack Teng |
| collection | DOAJ |
| description | Introduction
Research using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK).
Objectives and methods
This paper describes the results of a public deliberation event held in April 2018 in Vancouver, British Columbia. The purpose of this event was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research with a focus on the processes and regulations employed to release data. The event brought together 23 members of the public over two weekends.
Results
Participants developed and voted on 19 policy-relevant statements. Voting results and the rationale behind any disagreements are reported here. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use.
Conclusions
Generally, participants were supportive of research using linked data because of the value they provide to society. Participants expressed a desire to see the data access request process made more efficient to facilitate more research, as long as there are adequate protections in place around security and privacy of the data. |
| first_indexed | 2024-03-09T09:04:00Z |
| format | Article |
| id | doaj.art-4f3d8fb0f2f7480386f02cb27b36f654 |
| institution | Directory Open Access Journal |
| issn | 2399-4908 |
| language | English |
| last_indexed | 2024-03-09T09:04:00Z |
| publishDate | 2019-05-01 |
| publisher | Swansea University |
| record_format | Article |
| series | International Journal of Population Data Science |
| spelling | doaj.art-4f3d8fb0f2f7480386f02cb27b36f6542023-12-02T10:50:22ZengSwansea UniversityInternational Journal of Population Data Science2399-49082019-05-014110.23889/ijpds.v4i1.1103Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, CanadaJack Teng0Colene Bentley1Michael M Burgess2Kieran C O'Doherty3Kimberlyn M McGrail4Population Data BC, University of British Columbia, 201-2206 East Mall, Vancouver, BC, V6T 1Z3 CanadaCanadian Centre for Applied Research in Cancer Control, BC Cancer, 675 West 10th Ave., Vancouver, BC, V5Z 1L3, CanadaW. Maurice Young Centre for Applied Ethics, School of Population and Public Health, Medical Genetics, Southern Medical Program, University of British Columbia, Kelowna, BC, V1V1V7, CanadaDepartment of Psychology, University of Guelph, MacKinnon Ext (Bldg. 154), 87 Trent Lane,Guelph, ON, N1G2W1, Canada1. Population Data BC, University of British Columbia, 201-2206 East Mall, Vancouver, BC, V6T1Z3 Canada. 2. Centre for Health Services and Policy Research, School of Population and Public Health, University of British Columbia, 201-2206 East Mall, Vancouver, BC, V6T 1Z3 CanadaIntroduction Research using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK). Objectives and methods This paper describes the results of a public deliberation event held in April 2018 in Vancouver, British Columbia. The purpose of this event was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research with a focus on the processes and regulations employed to release data. The event brought together 23 members of the public over two weekends. Results Participants developed and voted on 19 policy-relevant statements. Voting results and the rationale behind any disagreements are reported here. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use. Conclusions Generally, participants were supportive of research using linked data because of the value they provide to society. Participants expressed a desire to see the data access request process made more efficient to facilitate more research, as long as there are adequate protections in place around security and privacy of the data.https://ijpds.org/article/view/1103public engagementpublic recommendationsdata sharing practicesdata sharing policies |
| spellingShingle | Jack Teng Colene Bentley Michael M Burgess Kieran C O'Doherty Kimberlyn M McGrail Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada International Journal of Population Data Science public engagement public recommendations data sharing practices data sharing policies |
| title | Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada |
| title_full | Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada |
| title_fullStr | Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada |
| title_full_unstemmed | Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada |
| title_short | Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada |
| title_sort | sharing linked data sets for research results from a deliberative public engagement event in british columbia canada |
| topic | public engagement public recommendations data sharing practices data sharing policies |
| url | https://ijpds.org/article/view/1103 |
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