Data sharing in the era of precision medicine: a scientometric analysis

2019 ◽  
Vol 2 ◽  
pp. 30-30
Author(s):  
Vincent Le Texier ◽  
Nesrine Henda ◽  
Stéphanie Cox ◽  
Marina Rousseau-Tsangaris ◽  
Pierre Saintigny
Keyword(s):  
Precision Medicine ◽  
Data Sharing ◽  
Scientometric Analysis

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

2020 ◽  
Author(s):  
Tamra Lysaght ◽  
Angela Ballantyne ◽  
Vicki Xafis ◽  
Serene Ong ◽  
Gerald Owen Schaefer ◽  
...  
Keyword(s):  
Precision Medicine ◽  
Data Sharing ◽  
Data Security ◽  
Genomic Sequence ◽  
Sequence Data ◽  
Public Trust ◽  
International Perspective ◽  
Research Participants ◽  
Related Data ◽  
Trade Offs

Abstract 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; trade-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.

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

2020 ◽  
Author(s):  
Tamra Lysaght ◽  
Angela Ballantyne ◽  
Vicki Xafis ◽  
Serene Ong ◽  
Gerald Owen Schaefer ◽  
...  
Keyword(s):  
Precision Medicine ◽  
Data Sharing ◽  
Data Security ◽  
Genomic Sequence ◽  
Sequence Data ◽  
Public Trust ◽  
International Perspective ◽  
Research Participants ◽  
Related Data ◽  
Trade Offs

Abstract 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.

scholarly journals Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore

2021 ◽  
Vol 11 (9) ◽  
pp. 921
Author(s):  
Tamra Lysaght ◽  
Angela Ballantyne ◽  
Hui Jin Toh ◽  
Andrew Lau ◽  
Serene Ong ◽  
...  
Keyword(s):  
Precision Medicine ◽  
Data Sharing ◽  
Health Research ◽  
Public Institutions ◽  
Government Agencies ◽  
Broad Consent ◽  
Social License ◽  
The Social ◽  
Age Range ◽  
Data Sensitivity

Background: Precision medicine (PM) programs typically use broad consent. This approach requires maintenance of the social license and public trust. The ultimate success of PM programs will thus likely be contingent upon understanding public expectations about data sharing and establishing appropriate governance structures. There is a lack of data on public attitudes towards PM in Asia. Methods: The aim of the research was to measure the priorities and preferences of Singaporeans for sharing health-related data for PM. We used adaptive choice-based conjoint analysis (ACBC) with four attributes: uses, users, data sensitivity and consent. We recruited a representative sample of n = 1000 respondents for an in-person household survey. Results: Of the 1000 respondents, 52% were female and majority were in the age range of 40–59 years (40%), followed by 21–39 years (33%) and 60 years and above (27%). A total of 64% were generally willing to share de-identified health data for IRB-approved research without re-consent for each study. Government agencies and public institutions were the most trusted users of data. The importance of the four attributes on respondents’ willingness to share data were: users (39.5%), uses (28.5%), data sensitivity (19.5%), consent (12.6%). Most respondents found it acceptable for government agencies and hospitals to use de-identified data for health research with broad consent. Our sample was consistent with official government data on the target population with 52% being female and majority in the age range of 40–59 years (40%), followed by 21–39 years (33%) and 60 years and above (27%). Conclusions: While a significant body of prior research focuses on preferences for consent, our conjoint analysis found consent was the least important attribute for sharing data. Our findings suggest the social license for PM data sharing in Singapore currently supports linking health and genomic data, sharing with public institutions for health research and quality improvement; but does not support sharing with private health insurers or for private commercial use.

scholarly journals American Heart Association Precision Medicine Platform Addresses Challenges in Data Sharing

2021 ◽  
Author(s):  
Laura M. Stevens ◽  
James A. de Lemos ◽  
Sandeep R. Das ◽  
Christine Rutan ◽  
Heather M. Alger ◽  
...  
Keyword(s):  
Precision Medicine ◽  
Data Sharing ◽  
American Heart Association ◽  
American Heart ◽  
Heart Association

Accelerating advanced precision medicine through a harmonized data exchange platform and research consortium (PMEC).

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 6557-6557
Author(s):  
Davendra Sohal ◽  
Julien Doudement ◽  
Ben George ◽  
Brian Michael Alexander ◽  
Stefan C. Grant ◽  
...  
Keyword(s):  
New England ◽  
Precision Medicine ◽  
Data Sharing ◽  
Data Exchange ◽  
Data Exchange Platform ◽  
Individual Site ◽  
Mutation Burden ◽  
Critical Requirement ◽  
Research Consortium ◽  
Willingness To Use

6557 Background: Clinico-genomic data sharing is consistently identified by the global oncology community as a critical requirement to accelerate the discovery and development of new targeted therapies. However, lack of effective collaborative models, fragmented and lengthy legal contracting processes, paucity of funding, and inadequate technological platforms have historically been obstacles for effective data sharing. Methods: In 2015, 10 US academic medical centers (AMC) and Foundation Medicine Inc. (FMI) formed PMEC. Feasibility assessments included creation of a master agreement across sites and willingness to use a central IRB. Oversight and research steering committees were created within the consortium. Through a centralized, secure web-based platform, FoundationInsight, we combined and shared de-identified, harmonized comprehensive FoundationOne genomic profiling data. Research proposals mining this data warehouse are invited quarterly from participant AMCs and peer-reviewed; approved studies are executed at all sites. Results: All 10 AMCs collaborated to execute a master registry participation agreement, followed by a master IRB protocol (New England IRB # 120180008), subsequently approved by individual site IRBs. Since its launch, the PMEC database has grown, on average, 60% per year, to now house over 14,000 cases. The shared dataset covers all tumor types (most commonly lung [17.2%], gastrointestinal [13.8%] and breast [9.2%]), encompasses genomic alterations in >300 genes, and reports relevant supplementary data such as tumor mutation burden and microsatellite instability status. To date, 15 studies have been proposed and evaluated using this platform, with 2 projects currently approved and in progress. Conclusions: We demonstrated the feasibility of creating a collaborative academic consortium that facilitates data sharing and potential discovery efforts in oncology. Technology solutions can accelerate the ability of AMCs, in partnership with central labs, to share and harmonize data to advance precision medicine. This approach lays the groundwork for conducting prospective, biomarker-enriched clinical trials among participating AMCs.

Complexity of Delivering Precision Medicine: Opportunities and Challenges

2018 ◽  
pp. 998-1007 ◽  
Author(s):  
Andrew A. Davis ◽  
Amy E. McKee ◽  
Warren A. Kibbe ◽  
Victoria M. Villaflor
Keyword(s):  
Clinical Trials ◽  
Precision Medicine ◽  
Data Sharing ◽  
Response To Treatment ◽  
Precision Oncology ◽  
Liquid Biopsies ◽  
Data Repositories ◽  
Molecular Features ◽  
Effective Manner ◽  
Tumor Boards

Precision medicine has emerged as a tool to match patients with the appropriate treatment based on the precise molecular features of an individual patient’s tumor. Although examples of targeted therapies exist resulting in dramatic improvements in patient outcomes, comprehensive genomic profiling of tumors has also demonstrated the incredible complexity of molecular alterations in tissue and blood. These sequencing methods provide opportunities to study the landscape of tumors at baseline and serially in response to treatment. These tools also serve as important biomarkers to detect resistance to treatment and determine higher likelihood of responding to particular treatments, such as immune checkpoint blockade. Federally funded and publicly available data repositories have emerged as mechanisms for data sharing. In addition, novel clinical trials are emerging to develop new ways of incorporating molecular matched therapy into clinical trials. Various challenges to delivery of precision oncology include understanding the complexity of advanced tumors based on evolving “omics” and treatment resistance. For physicians, determining when and how to incorporate genetic and molecular tools into clinic in a cost-effective manner is critical. Finally, we discuss the importance of well-designed prospective clinical trials, biomarkers such as liquid biopsies, the use of multidisciplinary tumor boards, and data sharing as evidence-based medicine tools to optimally study and deliver precision oncology to our patients.

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

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Tamra Lysaght ◽  
Angela Ballantyne ◽  
Vicki Xafis ◽  
Serene Ong ◽  
Gerald Owen Schaefer ◽  
...  
Keyword(s):  
Precision Medicine ◽  
Data Sharing ◽  
Data Security ◽  
Genomic Sequence ◽  
Sequence Data ◽  
Public Trust ◽  
International Perspective ◽  
Research Participants ◽  
Related Data ◽  
Trade Offs

Abstract 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; trade-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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