Data sharing in small and medium US cities: The role of community characteristics

2020 ◽  
Vol 98 (4) ◽  
pp. 922-940
Author(s):  
Federica Fusi ◽  
Mary K. Feeney
Author(s):  
T.J. Kasperbauer ◽  
Colin Halverson ◽  
Abby Garcia ◽  
Peter H. Schwartz

Biobank participants are often unaware of possible uses of their genetic and health information, despite explicit descriptions of those uses in consent forms. To explore why this misunderstanding persists, we conducted semi-structured interviews and knowledge tests with 22 participants who had recently enrolled in a research biobank. Results indicated that participants lacked understanding of privacy and data-sharing topics but were mostly unconcerned about associated risks. Participants described their answers on the knowledge test as largely driven by their trust in the healthcare system, not by a close reading of the information presented to them. This finding may help explain the difficulties in increasing participant understanding of privacy-related topics, even when such information is clearly presented in biobank consent forms.


2020 ◽  
pp. 1-29
Author(s):  
Jamie R. McCall ◽  
Austin Bussing ◽  
Michele M. Hoyman ◽  
Laurie E. Paarlberg

Abstract Communities with high levels of social capital enjoy an array of positive economic and community development outcomes. We assess the role of several key community characteristics, including the strength of government institutions, in explaining local social capital variation. The analysis draws on data from United States counties and includes regression modelling and a Blinder–Oaxaca decomposition to explore differences in social capital across an area’s metropolitan status and region. The data show social capital determinants vary by place both due to the endowment levels of these determinants and the productive value of their coefficients. For example, the coefficient productive values of government capacity explain some differences in social capital levels across metropolitan status (but not across region). Concurrently, variations in government capacity endowment levels help explain some differences in social capital levels across region (but not across metropolitan status).


2014 ◽  
Vol 21 (3) ◽  
pp. 271-296 ◽  
Author(s):  
Nayha Sethi

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.


2017 ◽  
Vol 74 (8) ◽  
pp. 1260-1274 ◽  
Author(s):  
Vivian M. Nguyen ◽  
Jill L. Brooks ◽  
Nathan Young ◽  
Robert J. Lennox ◽  
Neal Haddaway ◽  
...  

The potential for telemetry data to answer complex questions about aquatic animals and their interactions with the environment is limited by the capacity to store, manage, and access data across the research community. Large telemetry networks and databases exist, but are limited by the actions of researchers to share their telemetry data. Promoting data sharing and understanding researchers’ views on open practices is a major step toward enhancing the role of big data in ecology and resources management. We surveyed 307 fish telemetry researchers to understand their perspectives and experiences on data sharing. A logistic regression revealed that data sharing was positively related to researchers with collaborative tendencies, who belong to a telemetry network, who are prolific publishers, and who express altruistic motives for their research. Researchers were less likely to have shared telemetry data if they engage in radio and (or) acoustic telemetry, work for regional government, and value the time it takes to complete a research project. We identify and provide examples of both benefits and concerns that respondents have about sharing telemetry data.


2016 ◽  
Vol 8 (4) ◽  
pp. 296-312 ◽  
Author(s):  
Lauren Nichol Gase ◽  
Beth A. Glenn ◽  
Louis M. Gomez ◽  
Tony Kuo ◽  
Moira Inkelas ◽  
...  

2021 ◽  
pp. medethics-2021-107464
Author(s):  
Mackenzie Graham

Powered by ‘big health data’ and enormous gains in computing power, artificial intelligence and related technologies are already changing the healthcare landscape. Harnessing the potential of these technologies will necessitate partnerships between health institutions and commercial companies, particularly as it relates to sharing health data. The need for commercial companies to be trustworthy users of data has been argued to be critical to the success of this endeavour. I argue that this approach is mistaken. Our interactions with commercial companies need not, and should not, be based on trust. Rather, they should be based on confidence. I begin by elucidating the differences between trust, reliability, and confidence, and argue that trust is not the appropriate attitude to adopt when it comes to sharing data with commercial companies. I argue that what we really should want is confidence in a system of data sharing. I then provide an outline of what a confidence-worthy system of data sharing with commercial companies might look like, and conclude with some remarks about the role of trust within this system.


2022 ◽  
Vol 193 ◽  
pp. 106648
Author(s):  
Aiden Durrant ◽  
Milan Markovic ◽  
David Matthews ◽  
David May ◽  
Jessica Enright ◽  
...  
Keyword(s):  

2019 ◽  
Vol 10 (3) ◽  
pp. 522-537
Author(s):  
Federica CACCIATORE ◽  
Mariolina ELIANTONIO

The Common Fisheries Policy (CFP) is one of the ever-increasing policy areas that have witnessed the creation of forms of “networked enforcement”, meaning enforcement structures in which several national and EU authorities cooperate. Amongst those are a number of legal requirements and applications for sharing data on fisheries between national and European competent authorities. This form of networked enforcement casts some questions as regards the existence of corresponding accountability mechanisms, which serve to legitimate the enforcement activities in the CFP. The aim of this paper is to examine the networked enforcement mechanisms arising from the CFP, with a special focus on the data-sharing activities and the role of European Fisheries Control Agency as pivotal to the cooperation between national authorities, with a view to assessing the gaps of accountability arising from them, and analysing the possible alternative ways to provide the enforcement phase with legitimacy.


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