The European Medical Information Framework project, funded through the IMI programme, has designed and implemented a federated platform to connect health data from a variety of sources across Europe, to facilitate large scale clinical and life sciences research. It enables approved users to analyse securely multiple, diverse, data via a single portal, thereby mediating research opportunities across a large quantity of research data. EMIF developed a code of practice to ensure the privacy protection of data subjects, protect the interests of (...) data sharing parties, comply with legislation and various organisational policies on data protection, uphold best practices in the protection of personal privacy and information governance, and eventually promote these best practices more widely. EMIF convened an Ethics Advisory Board, to provide feedback on its approach, platform, and the EcoP. The most important challenges the ECoP team faced were: how to define, control and monitor the purposes for which federated health data are used; the kinds of organisation that should be permitted to conduct permitted research; and how to monitor this. This manuscript explores those issues, offering the combined insights of the EAB and EMIF core ECoP team. For some issues, a consensus on how to approach them is proposed. For other issues, a singular approach may be premature but the challenges are summarised to help the community to debate the topic further. Arguably, the issues and their analyses have application beyond EMIF, to many research infrastructures connected to health data sources. (shrink)

Although the theory of definability had many important antecedents—such as the descriptive set theory initiated by the French semi-intuitionists in the early 1900s—the main ideas were first laid out in precise mathematical terms by Alfred Tarski beginning in 1929. We review here the basic notions of languages, explicit definability, and grammatical complexity, and emphasize common themes in the theories of definability for four important languages underlying, respectively, descriptive set theory, recursive function theory, classical pure logic, and finite-universe logic. We review (...) the history of previous studies of the similarities and differences in the theories of definability of the first three of these four languages. A seminal role leading toward unification of the theories has been played by the separation principles introduced by Nikolai Luzin in 1927. Emphasizing analogies and driving toward further unification embracing finite-universe logic we concentrate on a simple example—the first and second separation principles for existential-universal first-order sentences . Using this as a test case for the fundamental problem of how to “finitize” arguments in classical pure logic to the finite-universe case, we are led to the analogous negative solution by using the theory of certain special graphs: a graph is - special for any positive integers m , n , p , q iff it is bipartite with m red points and n blue points and for every p -tuple of red points there is a blue point to which they are all connected . As an aside we introduce for further study a natural “Ramseyesque” increasing sequence A of positive integers, where A is the least positive integer n for which an -special graph exists. (shrink)

How will the adoption of genetically modified staple crops reconfigure labor processes in Sub-Saharan Africa? This article focuses on Uganda, where GM varieties of matooke, the country’s primary carbohydrate staple, are expected to be commercialized within the next few years. The paper draws on survey data and focus groups with a random sample of over one hundred and fifty growers to investigate the potential ways a variety engineered to be resistant to banana bacterial wilt might impact labor dynamics. A BBW (...) resistant GM variety will displace labor currently allocated to disease prevention and control, and increase the labor required for harvesting higher yields. How farmers can address the need for more harvesting labor varies significantly according to region. In the southwestern highlands, producers can increase their portion of hired labor. In the central and eastern regions, where farms tend to be smaller and subsistence-oriented, farmers are more likely to intensify their use of unpaid family labor, particularly that of wives. Hence, while GM technology may result in increased yields for small-scale farmers in Uganda, this is likely to come at the cost of intensifying the agricultural labor burdens of women in the central and eastern region. (shrink)

Who gets to practice and participate in science? Research teams in Puerto Rico and New Zealand have each sequenced the genomes of parrot populations native to these locales: the iguaca and kākāpō, respectively. In both cases, crowdfunding and social media were instrumental in garnering public interest and funding. These forms of Internet-mediated participation impacted how conservation science was practiced in these cases and shaped emergent social roles and relations. As citizens “follow,” fund, and “like” the labor of conservation, they create (...) new relational possibilities for and with science. For example, the researchers became newly engaged and engaging by narrating and displaying the parrots via an Internet-inflected aesthetic. The visibility of online modalities shifted accountabilities as researchers considered whom this crowdfunded work answered to and how to communicate their progress and results. The affordances of the Internet allowed researchers from the peripheries of the scientific establishment to produce genomic knowledge for globally dispersed audiences. The convergence of genomic and Internet technology here shaped scientific practice by facilitating new modes of participation—for laypeople in science but also for scientists in society. (shrink)