Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand

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.

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Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa: a meeting report

AAS Open Research ◽

10.12688/aasopenres.12968.1 ◽

2019 ◽

Vol 2 ◽

pp. 15

Author(s):

Ciara Staunton ◽

Rachel Adams ◽

Edward S. Dove ◽

Natalie Harriman ◽

Lyn Horn ◽

...

Keyword(s):

South Africa ◽

Data Sharing ◽

Data Protection ◽

Health Research ◽

Personal Information ◽

Open Science ◽

Research Data ◽

Genomic Research ◽

Meeting Report ◽

Challenges And Opportunities

Genomic research and biobanking has undergone exponential growth in Africa and at the heart of this research is the sharing of biospecimens and associated clinical data amongst researchers in Africa and across the world. While this move towards open science is progressing, there has been a strengthening internationally of data protection regulations that seek to safeguard the rights of data subjects while promoting the movement of data for the benefit of research. In line with this global shift, many jurisdictions in Africa are introducing data protection regulations, but there has been limited consideration of the regulation of data sharing for genomic research and biobanking in Africa. South Africa (SA) is one country that has sought to regulate the international sharing of data and has enacted the Protection of Personal Information Act (POPIA) 2013 that will change the governance and regulation of data in SA, including health research data, once it is in force. To identify and discuss challenges and opportunities in the governance of data sharing for genomic and health research data in SA, a two-day meeting was convened in February 2019 in Cape Town, SA with over 30 participants with expertise in law, ethics, genomics and biobanking science, drawn from academia, industry, and government. This report sets out some of the key challenges identified during the workshop and the opportunities and limitations of the current regulatory framework in SA.

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PERANAN INSPEKTORAT KABUPATENSUMENEP DALAM MENCEGAH DAN MENDETEKSI FRAUD DI DINAS PENDIDIKAN SUMENEP

PERFORMANCE Jurnal Bisnis & Akuntansi ◽

10.24929/feb.v5i1.126 ◽

2015 ◽

Vol 5 (1) ◽

Author(s):

Astri Furqani ◽

Hafidhah .

Keyword(s):

Local Government ◽

Qualitative Study ◽

Asset Management ◽

Sampling Technique ◽

Research Data ◽

Qualitative Approach ◽

Primary Data ◽

The Government

In this era, a lot of activities that can not be separated from the practice of cheating or fraud , no exception In the government . Inspektorat Sumenep is the leading institution of internal Local Government in preventing and detecting fraud in the Local Government appropiate Perbup Sumenep No. 29 of 2008 . Dinas Pendidikan Sumenep need attention on the issue . This is due to Dinas Pendidikan Sumenep an agency with the largest number of assets and managing large budgets . These conditions led to the formulation of the problem is How Inspektorat Sumenep role in preventing and detecting fraud in Dinas Pendidikan Sumenep. This study used a qualitative approach in which the focus of this study is Inspektorat role in preventing and detecting fraud at Dinas Pendidikan Sumenep . Primary data obtained by direct interviews with the parties directly related to the determination of the source of research data in a qualitative study using nonprobability sampling . The sampling technique used was purposive sampling . The conclusion of this study, role of the Inspektorat Sumenep in the prevention of fraud in Dinas Pendidikan Sumenep still not maximal . This is due to Inspektorat Sumenep not supervise from the planning / budgeting and not optimal in overseeing and assisting the implementation of the SPIP as an instrument of fraud prevention in Dinas Pendidikan Sumenep . The role of Inspektorat Sumenep in the detection of fraud in Dinas Pendidikan Sumenep done by conducting an audit of financial and asset management in each financial year.Keywords: fraud, government, inspektorat.

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