Tag Archives: data sharing

Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings

Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best practices in ethical data sharing in low- and middle-income settings.

Our research suggests that for data sharing to be effective and sustainable, multiple social and ethical requirements need to be met. An effective model of data sharing will be one in which considered judgments will need to be made about how best to achieve scientific progress, minimize risks of harm, promote fairness and reciprocity, and build and sustain trust.

URL : Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings

Alternative location : http://m.jre.sagepub.com/content/10/3/302

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27 août 2015 · 20 h 41 min

Developing Ethical Practices for Public Health Research Data Sharing in South Africa : The Views and Experiences From a Diverse Sample of Research Stakeholders

The abundance of South African clinical and public health research data has the potential to unlock important and valuable future advances in biomedical science. Amid increasing calls for more effective sharing of individual-level data, commitment to promote access to research data is evident within South Africa’s public research sector, but national guidance and regulation are absent.

This qualitative study examined the perceptions, experiences and concerns of 32 research stakeholders about data-sharing practices. There was consensus about the utility of data sharing in publicly funded health research. However, disparate views emerged about the possible harms and benefits of sharing data and how these should be weighed. The relative dearth of policies governing data-sharing practices needs to be addressed and a framework of support developed that incentivizes data-sharing practices for researchers that are both ethical and effective.

URL : Developing Ethical Practices for Public Health Research Data Sharing in South Africa

Alternative location : http://m.jre.sagepub.com/content/10/3/290

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27 août 2015 · 20 h 36 min

Perceived Benefits, Harms, and Views About How to Share Data Responsibly : A Qualitative Study of Experiences With and Attitudes Toward Data Sharing Among Research Staff and Community Representatives in Thailand

The Thailand Major Overseas Programme coordinates large multi-center studies in tropical medicine and generates vast amounts of data. As the data sharing movement gains momentum, we wanted to understand attitudes and experiences of relevant stakeholders about what constitutes good data sharing practice. We conducted 15 interviews and three focus groups discussions involving 25 participants and found that they generally saw data sharing as something positive.

Data sharing was viewed as a means to contribute to scientific progress and lead to better quality analysis, better use of resources, greater accountability, and more outputs. However, there were also important reservations including potential harms to research participants, their communities, and the researchers themselves. Given these concerns, several areas for discussion were identified: data standardization, appropriate consent models, and governance.

URL : Journal of Empirical Research on Human Research Ethics-2015-Cheah-278-89

Alternative location : http://m.jre.sagepub.com/content/10/3/278

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27 août 2015 · 20 h 32 min

Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya : Views on Fair Process for Informed Consent, Access Oversight, and Community Engagement

Increased global sharing of public health research data has potential to advance scientific progress but may present challenges to the interests of research stakeholders, particularly in low-to-middle income countries. Policies for data sharing should be responsive to public views, but there is little evidence of the systematic study of these from low-income countries.

This qualitative study explored views on fair data-sharing processes among 60 stakeholders in Kenya with varying research experience, using a deliberative approach. Stakeholders’ attitudes were informed by perceptions of benefit and concerns for research data sharing, including risks of stigmatization, loss of privacy, and undermining scientific careers and validity, reported in detail elsewhere.

In this article, we discuss institutional trust-building processes seen as central to perceptions of fairness in sharing research data in this setting, including forms of community involvement, individual prior awareness and agreement to data sharing, independence and accountability of governance mechanisms, and operating under a national framework.

URL : Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya

Alternative location : http://m.jre.sagepub.com/content/10/3/264

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27 août 2015 · 19 h 54 min

Trust, Respect, and Reciprocity : Informing Culturally Appropriate Data-Sharing Practice in Vietnam

International science funders and publishers are driving a growing trend in data sharing. There is mounting pressure on researchers in low- and middle-income settings to conform to new sharing policies, despite minimal empirically grounded accounts of the ethical challenges of implementing the policies in these settings.

This study used in-depth interviews and focus group discussions with 48 stakeholders in Vietnam to explore the experiences, attitudes, and expectations that inform ethical and effective approaches to sharing clinical research data. Distinct views on the role of trust, respect, and reciprocity were among those that emerged to inform culturally appropriate best practices. We conclude by discussing the challenges that authors of data-sharing policies should consider in this unique context.

URL : Trust, Respect, and Reciprocity

Alternative location : http://m.jre.sagepub.com/content/10/3/251

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27 août 2015 · 19 h 48 min