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

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.

scholarly journals Developing Ethical Practices for Public Health Research Data Sharing in South Africa

2015 ◽  
Vol 10 (3) ◽  
pp. 290-301 ◽  
Author(s):  
Spencer G. Denny ◽  
Blessing Silaigwana ◽  
Douglas Wassenaar ◽  
Susan Bull ◽  
Michael Parker
Keyword(s):  
Public Health ◽  
South Africa ◽  
Data Sharing ◽  
Health Research ◽  
Public Health Research ◽  
Research Data ◽  
Ethical Practices

Protection of Personal Information Act 2013 and data protection for health research in South Africa

2020 ◽  
Vol 10 (2) ◽  
pp. 160-179
Author(s):  
Ciara Staunton ◽  
Rachel Adams ◽  
Dominique Anderson ◽  
Talishiea Croxton ◽  
Dorcas Kamuya ◽  
...  
Keyword(s):  
South Africa ◽  
Data Protection ◽  
Health Research ◽  
Personal Information ◽  
Right To Privacy ◽  
Informational Privacy ◽  
The Right To Privacy ◽  
Constitutional Right ◽  
The Right ◽  
The Impact

Abstract The Protection of Personal Information Act (POPIA) [No.4 of 2013] is the first comprehensive data protection regulation to be passed in South Africa and it gives effect to the right to informational privacy derived from the constitutional right to privacy It is due to come into force in 2020, and seeks to regulate the processing of personal information in South Africa, regulate the flow of personal information across South Africa’s borders, and ensure that any limitations on the right to privacy are justified and aimed at protecting other important rights and interests. Although it was not drafted with health research in mind, POPIA will have an impact on the sharing of health data for research, in particular biorepositories. It is now timely to consider the impact of POPIA on biorepositories, and the necessary changes to their access and sharing arrangements prior to POPIA coming into force.

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

2018 ◽  
Vol 19 (1) ◽  
Author(s):  
Phaik Yeong Cheah ◽  
Nattapat Jatupornpimol ◽  
Borimas Hanboonkunupakarn ◽  
Napat Khirikoekkong ◽  
Podjanee Jittamala ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Data Sharing ◽  
Health Research ◽  
Research Data ◽  
Broad Consent

scholarly journals Tutkimusaineiston avoin jakaminen – tutkimusorganisaatioiden jäsenten käsityksiä, kokemuksia ja mielipiteitä

2018 ◽  
Vol 37 (4) ◽  
Author(s):  
Heidi Enwald
Keyword(s):  
Data Sharing ◽  
Data Storage ◽  
Online Survey ◽  
Open Science ◽  
Research Data ◽  
Research Field ◽  
Open Research ◽  
Research Organizations ◽  
Data Collection Instrument ◽  
In The Beginning

Open research data is data that is free to access, reuse, and redistribute. This study focuses on the perceptions, opinions and experiences of staff and researchers of research institutes on topics related to open research data. Furthermore, the differences across gender, role in the research organization and research field were investigated. An international questionnaire survey, translated into Finnish and Swedish, was used as the data collection instrument. An online survey was distributed through an open science related network to Finnish research organizations. In the end, 469 responded to all 24 questions of the survey. Findings indicate that many are still unaware or uncertain about issues related to data sharing and long-term data storage. Women as well as staff and researchers of medical and health sciences were most concerned about the possible problems associated with data sharing. Those in the beginning of their scientific careers, hesitated about sharing their data.

scholarly journals Open-access policy and data-sharing practice in UK academia

2019 ◽  
Vol 46 (1) ◽  
pp. 41-52 ◽  
Author(s):  
Yimei Zhu
Keyword(s):  
Open Access ◽  
Data Sharing ◽  
Secondary Data ◽  
Open Science ◽  
Research Data ◽  
Academic Disciplines ◽  
Free Access ◽  
Online Publishing ◽  
Institutional Repositories ◽  
Access To Data

Data sharing can be defined as the release of research data that can be used by others. With the recent open-science movement, there has been a call for free access to data, tools and methods in academia. In recent years, subject-based and institutional repositories and data centres have emerged along with online publishing. Many scientific records, including published articles and data, have been made available via new platforms. In the United Kingdom, most major research funders had a data policy and require researchers to include a ‘data-sharing plan’ when applying for funding. However, there are a number of barriers to the full-scale adoption of data sharing. Those barriers are not only technical, but also psychological and social. A survey was conducted with over 1800 UK-based academics to explore the extent of support of data sharing and the characteristics and factors associated with data-sharing practice. It found that while most academics recognised the importance of sharing research data, most of them had never shared or reused research data. There were differences in the extent of data sharing between different gender, academic disciplines, age and seniority. It also found that the awareness of Research Council UK’s (RCUK) Open-Access (OA) policy, experience of Gold and Green OA publishing, attitudes towards the importance of data sharing and experience of using secondary data were associated with the practice of data sharing. A small group of researchers used social media such as Twitter, blogs and Facebook to promote the research data they had shared online. Our findings contribute to the knowledge and understanding of open science and offer recommendations to academic institutions, journals and funding agencies.

scholarly journals Research Stakeholders’ Views on Benefits and Challenges for Public Health Research Data Sharing in Kenya: The Importance of Trust and Social Relations

PLoS ONE ◽  
2015 ◽  
Vol 10 (9) ◽  
pp. e0135545 ◽  
Author(s):  
Irene Jao ◽  
Francis Kombe ◽  
Salim Mwalukore ◽  
Susan Bull ◽  
Michael Parker ◽  
...  
Keyword(s):  
Public Health ◽  
Data Sharing ◽  
Social Relations ◽  
Health Research ◽  
Public Health Research ◽  
Research Data

scholarly journals Identifiability, Genomics and UK Data Protection Law

2010 ◽  
Vol 17 (4) ◽  
pp. 329-344 ◽  
Author(s):  
Liam Curren ◽  
Jane Kaye ◽  
Paula Boddington ◽  
Karen Melham ◽  
Naomi Hawkins ◽  
...  
Keyword(s):  
Data Protection ◽  
Genetic Research ◽  
Research Data ◽  
Genomic Research ◽  
Research Use ◽  
Next Generation Dna Sequencing ◽  
Ethical Concerns ◽  
Whole Genomes ◽  
Protection Legislation ◽  
Data Protection Law

AbstractAnalyses of individuals’ genomes — their entire DNA sequence — have increased knowledge about the links between genetics and disease. Anticipated advances in ‘next generation’ DNA-sequencing techniques will see the routine research use of whole genomes, rather than distinct parts, within the next few years. The scientific benefits of genomic research are, however, accompanied by legal and ethical concerns. Despite the assumption that genetic research data can and will be rendered anonymous, participants’ identities can sometimes be elucidated, which could cause data protection legislation to apply. We undertake a timely reappraisal of these laws — particularly new penalties — and identifiability in genomic research.

scholarly journals The Promotion of Data Sharing in Pharmacoepidemiology

2014 ◽  
Vol 21 (3) ◽  
pp. 271-296 ◽  
Author(s):  
Nayha Sethi
Keyword(s):  
Patient Safety ◽  
Data Sharing ◽  
Data Protection ◽  
Health Research ◽  
Crucial Role ◽  
Working Party ◽  
Data Reuse ◽  
European Data ◽  
Protection Legislation

This article addresses the role of pharmacoepidemiology in patient safety and the crucial role of data sharing in ensuring that such activities occur. Against the backdrop of proposed reforms of European data protection legislation, it considers whether the current legislative landscape adequately facilitates this essential data sharing. It is argued that rather than maximising and promoting the benefits of such activities by facilitating data sharing, current and proposed legislative landscapes hamper these vital activities. The article posits that current and proposed data protection approaches to pharmacoepidemiology — and more broadly, re-uses of data — should be reoriented towards enabling these important safety enhancing activities. Two potential solutions are offered: 1) a dedicated working party on data reuse for health research and 2) the introduction of new, dedicated legislation.

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