Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence

Kalkman, Shona; Delden, Johannes van; Banerjee, Amitava; Tyl, Benoît; Mostert, Menno; Thiel, Ghislaine J. M. W. van

doi:10.1136/medethics-2019-105651

Cited by 154 publications

(171 citation statements)

References 38 publications

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“…A recent meta-analysis of this literature found the following recurrent issues: social value of the research, privacy, risk-minimization, data security, control, transparency and engagement, trust, responsibility and accountability. 18 Prior empirical research in Singapore indicates patient preferences for broad consent models to manage genome data sharing for research and the return of cancer profiling results (provided this is accompanied with adequate explanation). 19 Broad consent involves consent for an unspecified range of future research projects, subject to limited content and/or process restrictions, collected at the point of sample or data donation; it is popular for bio-banking globally.…”

Section: Introductionmentioning

confidence: 99%

"Who is Watching the Watchdog?": Ethical Perspectives of Sharing Health-related Data for Precision Medicine in Singapore

Lysaght

Ballantyne

Xafis

et al. 2020

Preprint

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Background: We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine (PM) and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research. Methods: We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages (English, Mandarin and Malay) and analysed with qualitative content and thematic analysis. Results: Four key themes emerged: nuanced understandings of data security and data sensitivity; trades-offs between data protection and research benefits; trust (and distrust) in the public and private sectors; and governance and control options. Participants were aware of the inherent risks associated with data sharing for research. Participants expressed conditional support for data sharing, including genomic sequence data and information contained within electronic medical records. This support included sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Support was conditional on the perceived social value of the research and appropriate de-identification and data security processes. Participants suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore. Conclusion: Maintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research. Contrary to themes in much prior research, participants demonstrated a sophisticated understanding of the inherent risks of data sharing, analysed trade-offs between risks and potential benefits of PM, and often adopted an international perspective.

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Section: Introductionmentioning

confidence: 99%

"Who is Watching the Watchdog?": Ethical Perspectives of Sharing Health-related Data for Precision Medicine in Singapore

Lysaght

Ballantyne

Xafis

et al. 2020

Preprint

View full text Add to dashboard Cite

show abstract

“…A recent meta-analysis of this literature found the following recurrent issues: social value of the research, privacy, risk-minimisation, data security, control, transparency and engagement, trust, responsibility and accountability. 18 Prior empirical research in Singapore indicates patient preferences for broad consent models to manage genome data sharing for research and the return of cancer pro ling results (provided this is accompanied with adequate explanation). 19 Broad consent involves consent for an unspeci ed range of future research projects, subject to limited content and/or process restrictions, collected at the point of sample or data donation; it is popular for bio-banking globally.…”

Section: Introductionmentioning

confidence: 99%

“Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore

Lysaght

Ballantyne

Xafis

et al. 2020

Preprint

View full text Add to dashboard Cite

Background We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine (PM) and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research.Methods We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages (English, Mandarin and Malay) and analysed with qualitative content and thematic analysis. Results Four key themes emerged: nuanced understandings of data security and data sensitivity; trades-offs between data protection and research benefits; trust (and distrust) in the public and private sectors; and governance and control options. Participants were aware of the inherent risks associated with data sharing for research. Participants expressed conditional support for data sharing, including genomic sequence data and information contained within electronic medical records. This support included sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Support was conditional on the perceived social value of the research and appropriate de-identification and data security processes. Participants suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore.Conclusion Maintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research. Contrary to themes in much prior research, participants demonstrated a sophisticated understanding of the inherent risks of data sharing, analysed trade-offs between risks and potential benefits of PM, and often adopted an international perspective.

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“…Indeed, a systematic review of 25 qualitative studies cited that support as one of seven themes. [9] Some study participants indicate that contributing to advancements in healthcare-the 'greater good'-is their reason for supporting data sharing. [10,11] Others see the potential to learn health information about themselves or to help others with the same health condition or disease.…”

Section: Introductionmentioning

confidence: 99%

Conditional Support: Focus Group Participants’ Views on Researchers’ Access and Use of Personal Health Information

McCormick

2020

Preprint

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Background: Researchers are increasingly collecting large amounts of de-identified data about individuals to address important health-related challenges and answer fundamental questions. Current US federal regulations permit researchers to use already collected and stored de-identified health-related data from a variety of sources without seeking consent from patients. While multiple studies have explored patients’ views on the sharing of their health-related data, few have investigated their views on the policies and processes institutions have in place or should have in place for accessing, using, and sharing of data.Methods: We conducted 5 with individuals who live within a 20-mile radius of the local academic medical center. In addition, in order to increase the number of participants younger than 45 years of age, we held a focus group with undergraduates at a local university. Transcripts were analyzed using content analysis. The codebook was revised and refined, codes clarified, and disagreements resolved through discussion.Results: A total of 37 individuals participated, ages 18-76. Most participants were not surprised that researchers accessed and used de-identified personal information for research. For participants, transparency was key. They wanted to know when their data were accessed, for what purpose, and by whom. However, for some participants, just knowing their data had been accessed and used was not enough. Rather they wanted to have some control over the use of their data valuing the chance to opt-out. That said, wanting some control didn’t conflict with participants’ support of the use of their data for research. Most participants trusted their local academic medical institution, but were less trusting of other academic medical institutions and commercial entities. Finally, participants supported establishment of an advisory council or group with responsibility for deciding what data were used, who was accessing those data, and whether data could be shared. Conclusions: The trust people have in their local institutions should be considered fragile, and institutions should not take that trust for granted. How institutions choose to govern patients’ data and what voices they include in decisions about use and access are critical to maintaining the trust of the public.

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Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence

Cited by 154 publications

References 38 publications

"Who is Watching the Watchdog?": Ethical Perspectives of Sharing Health-related Data for Precision Medicine in Singapore

"Who is Watching the Watchdog?": Ethical Perspectives of Sharing Health-related Data for Precision Medicine in Singapore

“Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore

Conditional Support: Focus Group Participants’ Views on Researchers’ Access and Use of Personal Health Information

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