Ipek Demir

DataSHIELD: taking the analysis to the data, not the data to the analysis

Background: Research in modern biomedicine and social science requires sample sizes so large that they can often only be achieved through a pooled co-analysis of data from several studies. But the pooling of information from individuals in a central database that may be queried by researchers raises important ethico-legal questions and can be controversial. In the UK this has been highlighted by recent debate and controversy relating to the UK’s proposed ‘care.data’ initiative, and these issues reflect important societal and professional concerns about privacy, confidentiality and intellectual property. DataSHIELD provides a novel technological solution that can circumvent some of the most basic challenges in facilitating the access of researchers and other healthcare professionals to individual-level data. Methods: Commands are sent from a central analysis computer (AC) to several data computers (DCs) storing the data to be co-analysed. The data sets are analysed simultaneously but in parallel. The separate parallelized analyses are linked by non-disclosive summary statistics and commands transmitted back and forth between the DCs and the AC. This paper describes the technical implementation of DataSHIELD using a modified R statistical environment linked to an Opal database deployed behind the computer firewall of each DC. Analysis is controlled through a standard R environment at the AC. Results: Based on this Opal/R implementation, DataSHIELD is currently used by the Healthy Obese Project and the Environmental Core Project (BioSHaRE-EU) for the federated analysis of 10 data sets across eight European countries, and this illustrates the opportunities and challenges presented by the DataSHIELD approach. Conclusions: DataSHIELD facilitates important research in settings where: (i) a co-analysis of individual-level data from several studies is scientifically necessary but governance restrictions prohibit the release or sharing of some of the required data, and/or render data access unacceptably slow; (ii) a research group (e.g. in a developing nation) is particularly vulnerable to loss of intellectual property—the researchers want to fully share the information held in their data with national and international collaborators, but do not wish to hand over the physical data themselves; and (iii) a data set is to be included in an individual-level co-analysis but the physical size of the data precludes direct transfer to a new site for analysis.

Realizing the promise of population biobanks: a new model for translation

The promise of science lies in expectations of its benefits to societies and is matched by expectations of the realisation of the significant public investment in that science. In this paper, we undertake a methodological analysis of the science of biobanking and a sociological analysis of translational research in relation to biobanking. Part of global and local endeavours to translate raw biomedical evidence into practice, biobanks aim to provide a platform for generating new scientific knowledge to inform development of new policies, systems and interventions to enhance the public’s health. Effectively translating scientific knowledge into routine practice, however, involves more than good science. Although biobanks undoubtedly provide a fundamental resource for both clinical and public health practice, their potentiating ontology—that their outputs are perpetually a promise of scientific knowledge generation—renders translation rather less straightforward than drug discovery and treatment implementation. Biobanking science, therefore, provides a perfect counterpoint against which to test the bounds of translational research. We argue that translational research is a contextual and cumulative process: one that is necessarily dynamic and interactive and involves multiple actors. We propose a new multidimensional model of translational research which enables us to imagine a new paradigm: one that takes us from bench to bedside to backyard and beyond, that is, attentive to the social and political context of translational science, and is cognisant of all the players in that process be they researchers, health professionals, policy makers, industry representatives, members of the public or research participants, amongst others.

Battling with Memleket in London: The Kurdish Diaspora's Engagement with Turkey

Since the late 1980s there has been a significant migration of Kurds from Turkey to various countries in Western Europe. Even though Kurds from Turkey make up a significant proportion of Londons ethnic minority population, they constitute an ‘invisible’ diasporic community, both in terms of the current debates surrounding ethnicity and the Muslim minority in the UK, and in diaspora studies. This article examines how the Kurdish diaspora interacts with, and relates to, their country of origin. It highlights their resistance to, and struggle with, Turkey (as defined by their displacement and suppression of cultural and linguistic rights) as well as the close and, at times, intimate ties Kurds continue to maintain with Turks and Turkey. Whilst the first is conceptualised as ‘battling with Turkey’, the latter is conceptualised within the framework of ‘memleket’ (homeland) ties. The article explores how the Kurdish diaspora encodes its orientation towards, as well as its resistance to, Turkey; in so doing, it brings visibility to this largely ignored and understudied, yet politically very active, diasporic formation in London.

Securing the Data Economy: Translating Privacy and Enacting Security in the Development of DataSHIELD

Contemporary bioscience is seeing the emergence of a new data economy: with data as its fundamental unit of exchange. While sharing data within this new ‘economy’ provides many potential advantages, the sharing of individual data raises important social and ethical concerns. We examine ongoing development of one technology, DataSHIELD, which appears to elide privacy concerns about sharing data by enabling shared analysis while not actually sharing any individual-level data. We combine presentation of the development of DataSHIELD with presentation of an ethnographic study of a workshop to test the technology. DataSHIELD produced an application of the norm of privacy that was practical, flexible and operationalizable in researchers’ everyday activities, and one which fulfilled the requirements of ethics committees. We demonstrated that an analysis run via DataSHIELD could precisely replicate results produced by a standard analysis where all data are physically pooled and analyzed together. In developing DataSHIELD, the ethical concept of privacy was transformed into an issue of security. Development of DataSHIELD was based on social practices as well as scientific and ethical motivations. Therefore, the ‘success’ of DataSHIELD would, likewise, be dependent on more than just the mathematics and the security of the technology.

Securing the data economy: translating privacy and enacting security in the development of DataSHIELD.

Contemporary bioscience is seeing the emergence of a new data economy: with data as its fundamental unit of exchange. While sharing data within this new ‘economy’ provides many potential advantages, the sharing of individual data raises important social and ethical concerns. We examine ongoing development of one technology, DataSHIELD, which appears to elide privacy concerns about sharing data by enabling shared analysis while not actually sharing any individual-level data. We combine presentation of the development of DataSHIELD with presentation of an ethnographic study of a workshop to test the technology. DataSHIELD produced an application of the norm of privacy that was practical, flexible and operationalizable in researchers’ everyday activities, and one which fulfilled the requirements of ethics committees. We demonstrated that an analysis run via DataSHIELD could precisely replicate results produced by a standard analysis where all data are physically pooled and analyzed together. In developing DataSHIELD, the ethical concept of privacy was transformed into an issue of security. Development of DataSHIELD was based on social practices as well as scientific and ethical motivations. Therefore, the ‘success’ of DataSHIELD would, likewise, be dependent on more than just the mathematics and the security of the technology.

On the Representation of ‘Others’ at Europe's Borders: The Case of Iraqi Kurds

This article unearths and examines the representation of Iraqi Kurds in the Turkish media during the 2003 Iraq War. In order to identify the discursive patterns that were created about Iraqi Kurds, 350 news articles from Hürriyet, one of the most widely read and influential newspapers in Turkey, were examined. Our analysis identified an Orientalist and belittling representation which constructed Iraqi Kurds as a ‘backward’, ‘tribal’, ‘looter’, ‘plotter’, ‘other’, and which linked such Orientalist representations with a rising Iraqi Kurdish ‘threat’ against the ‘civilized’ Turkish nation-state. The study signals how Turkeys internal issues with its own Kurdish population have particular consequences for those who are outside the Turkish borders (Iraqi Kurds). In particular, the paper draws attention to the media representation and stigmatization of subjugated groups at the borders of Europe, focusing on how Europes ‘others’ construct Orientalist notions of superiority and inferiority when engaging with their ‘East’.

Data sharing across biobanks: epistemic values, data mutability and data incommensurability

Despite the centrality of epistemic issues in biobank knowledge generation, there is currently a lacuna in research addressing the epistemic assumptions of biobank science and data sharing. The article addresses this lacuna. Using the insights of philosophical and sociological analysis, we examine standardization and harmonization and central challenges biobank data-sharing faces. We defend two central epistemic values, namely “spatial and temporal translatability” and “epistemic adequacy” which foster effective biobank knowledge generation. The first refers to the way in which biobank data need to be re-usable and re-purposable by bioscience researchers who did not create them. Given the perennial issues of data mutability and incommensurability, we also propose “epistemic adequacy.” In uncovering the social and epistemic foundations of biobank science, we emphasize issues essential for achieving effective and transparent biobank practice and productive communication and engagement with the public about the nature, potential and limits of biobanks.

Thomas Kuhn's Construction of Scientific Communities

Communitarian approaches as exemplified in the works of Alasdair MacIntyre (in political philosophy), Amitai Etzioni (in sociology), Martin Kusch (in philosophy of science) and Lynn Hankinson Nelson (in feminist studies) have gained increasing importance in recent decades. This development is not without problems, however, as the essay attempts to demonstrate in relation to current communitarian approaches in science, where the works of Thomas Kuhn have been influential. Kuhn argues that progress in science takes place against the background of a community, sustained by strongly shared practices, beliefs and standards. Whilst this explains the persistence and continuity of communities, it cannot fully explain how change within a community occurs or how differences between communities are resolved. This contribution tries to overcome this problem in Kuhn’s work by arguing in favour of an alternative conception which recognises the heterogeneous character of scientific communities. More specifically, the essay argues that the beliefs and standards that the members of the community hold are an outcome of complex negotiation processes which are constantly evaluated rather than in a state of constant, static equilibrium as implied by Kuhn. Further, it argues that a coherent and adequate understanding of diversity and change within a community is essential for a satisfactory representation of interaction across communities.

Shedding an ethnic identity in diaspora: de-Turkification and the transnational discursive struggles of the Kurdish diaspora

ABSTRACT This article analyses how Kurdish diaspora (from Turkey) engage in de-Turkification, that is correcting, interrupting and shedding the intense Turkification and assimilation which Kurds have been recipients of in Turkey. As ‘everyday critical discourse analysts’ Kurdish mobilized actors identify, challenge and ideologically unpack the Turkishness manifest in their (Kurdish) interlocutors’ discourses via three means: inclusion, exclusion and repositioning. The article also identifies that self-definition amongst Kurds in London is shifting as previously self-identified ‘Turkish economic migrants’ over time become ‘Kurdish diaspora’. Rather than examining the often-discussed belonging ties of diasporas, it traces the critical interruptions and corrections Kurdish actors undertake in order to de-Turkify. The focus is on how an identity is being shed, rather than gained. In so doing, the article contributes to an understanding of the process of removal of asymmetric discourses rather than attempting to demonstrate their production or reproduction which have tended to dominate the critical discourse analysis literature.