Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey
Objectives This article aims to measure the willingness of the Swiss public to participate in personalised health research, and their preferences regarding data management and governance.Setting Results are presented from a nationwide survey of members of the Swiss public.Participants 15 106 randoml...
| Main Authors: | , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMJ Publishing Group
2022-08-01
|
| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/12/8/e060844.full |
| _version_ | 1811281396490043392 |
|---|---|
| author | Marcel Zwahlen Matthias Egger Effy Vayena Claudia Berlin Caroline Brall Kelly E Ormond |
| author_facet | Marcel Zwahlen Matthias Egger Effy Vayena Claudia Berlin Caroline Brall Kelly E Ormond |
| author_sort | Marcel Zwahlen |
| collection | DOAJ |
| description | Objectives This article aims to measure the willingness of the Swiss public to participate in personalised health research, and their preferences regarding data management and governance.Setting Results are presented from a nationwide survey of members of the Swiss public.Participants 15 106 randomly selected Swiss residents received the survey in September 2019. The response rate was 34.1% (n=5156). Respondent age ranged from 18 to 79 years, with fairly uniform spread across sex and age categories between 25 and 64 years.Primary and secondary outcome measures Willingness to participate in personalised health research and opinions regarding data management and governance.Results Most respondents preferred to be contacted and reconsented for each new project using their data (39%, 95% CI: 37.4% to 40.7%), or stated that their preference depends on the project type (29.4%, 95% CI: 27.9% to 31%). Additionally, a majority (52%, 95% CI: 50.3% to 53.8%) preferred their data or samples be stored anonymously or in coded form (43.4%, 95% CI: 41.7% to 45.1%). Of those who preferred that their data be anonymised, most also indicated a wish to be recontacted for each new project (36.8%, 95% CI: 34.5% to 39.2%); however, these preferences are in conflict. Most respondents desired to personally own their data. Finally, most Swiss respondents trust their doctors, along with researchers at universities, to protect their data.Conclusion Insight into public preference can enable Swiss biobanks and research institutions to create management and governance strategies that match the expectations and preferences of potential participants. Models allowing participants to choose how to interact with the process, while more complex, may increase individual willingness to provide data to biobanks. |
| first_indexed | 2024-04-13T01:33:03Z |
| format | Article |
| id | doaj.art-49c9c4874f1a4661b32bbf5ab7574c1b |
| institution | Directory Open Access Journal |
| issn | 2044-6055 |
| language | English |
| last_indexed | 2024-04-13T01:33:03Z |
| publishDate | 2022-08-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj.art-49c9c4874f1a4661b32bbf5ab7574c1b2022-12-22T03:08:28ZengBMJ Publishing GroupBMJ Open2044-60552022-08-0112810.1136/bmjopen-2022-060844Public preferences towards data management and governance in Swiss biobanks: results from a nationwide surveyMarcel Zwahlen0Matthias Egger1Effy Vayena2Claudia Berlin3Caroline Brall4Kelly E Ormond5Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerlandprofessor of epidemiology and public healthHealth Ethics and Policy Lab, Department of Health Sciences and Technology, ETH Zurich, Zurich, SwitzerlandInstitute of Social & Preventive Medicine, University of Bern, Bern, SwitzerlandDepartment of Health Sciences and Technology, ETH Zurich, Zurich, SwitzerlandDepartment of Health Sciences and Technology, ETH Zurich, Zurich, SwitzerlandObjectives This article aims to measure the willingness of the Swiss public to participate in personalised health research, and their preferences regarding data management and governance.Setting Results are presented from a nationwide survey of members of the Swiss public.Participants 15 106 randomly selected Swiss residents received the survey in September 2019. The response rate was 34.1% (n=5156). Respondent age ranged from 18 to 79 years, with fairly uniform spread across sex and age categories between 25 and 64 years.Primary and secondary outcome measures Willingness to participate in personalised health research and opinions regarding data management and governance.Results Most respondents preferred to be contacted and reconsented for each new project using their data (39%, 95% CI: 37.4% to 40.7%), or stated that their preference depends on the project type (29.4%, 95% CI: 27.9% to 31%). Additionally, a majority (52%, 95% CI: 50.3% to 53.8%) preferred their data or samples be stored anonymously or in coded form (43.4%, 95% CI: 41.7% to 45.1%). Of those who preferred that their data be anonymised, most also indicated a wish to be recontacted for each new project (36.8%, 95% CI: 34.5% to 39.2%); however, these preferences are in conflict. Most respondents desired to personally own their data. Finally, most Swiss respondents trust their doctors, along with researchers at universities, to protect their data.Conclusion Insight into public preference can enable Swiss biobanks and research institutions to create management and governance strategies that match the expectations and preferences of potential participants. Models allowing participants to choose how to interact with the process, while more complex, may increase individual willingness to provide data to biobanks.https://bmjopen.bmj.com/content/12/8/e060844.full |
| spellingShingle | Marcel Zwahlen Matthias Egger Effy Vayena Claudia Berlin Caroline Brall Kelly E Ormond Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey BMJ Open |
| title | Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey |
| title_full | Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey |
| title_fullStr | Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey |
| title_full_unstemmed | Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey |
| title_short | Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey |
| title_sort | public preferences towards data management and governance in swiss biobanks results from a nationwide survey |
| url | https://bmjopen.bmj.com/content/12/8/e060844.full |
| work_keys_str_mv | AT marcelzwahlen publicpreferencestowardsdatamanagementandgovernanceinswissbiobanksresultsfromanationwidesurvey AT matthiasegger publicpreferencestowardsdatamanagementandgovernanceinswissbiobanksresultsfromanationwidesurvey AT effyvayena publicpreferencestowardsdatamanagementandgovernanceinswissbiobanksresultsfromanationwidesurvey AT claudiaberlin publicpreferencestowardsdatamanagementandgovernanceinswissbiobanksresultsfromanationwidesurvey AT carolinebrall publicpreferencestowardsdatamanagementandgovernanceinswissbiobanksresultsfromanationwidesurvey AT kellyeormond publicpreferencestowardsdatamanagementandgovernanceinswissbiobanksresultsfromanationwidesurvey |