Concealment and discovery: the role of information security in biomedical data re-use

This is the author accepted manuscript. The final version is available from SAGE Publications via the DOI in this record.This paper analyses the role of information security (IS) in shaping the dissemination and re-use of biomedical data, as well as the embedding of such data in the material, social and regulatory landscapes of research. We consider the data management practices adopted by two UK-based data linkage infrastructures: the Secure Anonymised Information Linkage, a Welsh databank that facilitates appropriate re-use of health data derived from research and routine medical practice in the region; and the Medical and Environmental Data Mash-up Infrastructure, a project bringing together researchers from the University of Exeter, the London School of Hygiene and Tropical Medicine, the Met Office and Public Health England to link and analyse complex meteorological, environmental and epidemiological data. Through an in-depth analysis of how data are sourced, processed and analysed in these two cases, we show that IS takes two distinct forms: epistemic IS, focused on protecting the reliability and reusability of data as they move across platforms and research contexts; and infrastructural IS, concerned with protecting data from external attacks, mishandling and use disruption. These two dimensions are intertwined and mutually constitutive, and yet are often perceived by researchers as being in tension with each other. We discuss how such tensions emerge when the two dimensions of IS are operationalised in ways that put them at cross purpose with each other, thus exemplifying the vulnerability of data management strategies to broader governance and technological regimes. We also show that whenever biomedical researchers manage to overcome the conflict, the interplay between epistemic and infrastructural IS prompts critical questions concerning data sources, formats, metadata and potential uses, resulting in an improved understanding of the wider context of research and the development of relevant resources. This informs and significantly improves the re-usability of biomedical data, while encouraging exploratory analyses of secondary data sources.This research was funded by ERC grant award 335925 (DATA_SCIENCE), the Australian Research Council (Discovery Project DP160102989) and a MEDMI pilot project funded through MEDMI by MRC and NERC (MR/K019341/1)

Biometric Identification, Law and Ethics

This book undertakes a multifaceted and integrated examination of biometric identification, including the current state of the technology, how it is being used, the key ethical issues, and the implications for law and regulation. The five chapters examine the main forms of contemporary biometrics–fingerprint recognition, facial recognition and DNA identification– as well the integration of biometric data with other forms of personal data, analyses key ethical concepts in play, including privacy, individual autonomy, collective responsibility, and joint ownership rights, and proposes a raft of principles to guide the regulation of biometrics in liberal democracies.Biometric identification technology is developing rapidly and being implemented more widely, along with other forms of information technology. As products, services and communication moves online, digital identity and security is becoming more important. Biometric identification facilitates this transition. Citizens now use biometrics to access a smartphone or obtain a passport; law enforcement agencies use biometrics in association with CCTV to identify a terrorist in a crowd, or identify a suspect via their fingerprints or DNA; and companies use biometrics to identify their customers and employees. In some cases the use of biometrics is governed by law, in others the technology has developed and been implemented so quickly that, perhaps because it has been viewed as a valuable security enhancement, laws regulating its use have often not been updated to reflect new applications. However, the technology associated with biometrics raises significant ethical problems, including in relation to individual privacy, ownership of biometric data, dual use and, more generally, as is illustrated by the increasing use of biometrics in authoritarian states such as China, the potential for unregulated biometrics to undermine fundamental principles of liberal democracy. Resolving these ethical problems is a vital step towards more effective regulation.Ethics & Philosophy of Technolog

The Ethics of Medical Data Donation

This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. Today, it is easy to donate blood or even organs, but it is virtually impossible to donate one’s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes

Genomic stuff: Governing the (im)matter of life

Emphasizing the context of what has often been referred to as “scarce natural resources”, in particular forests, meadows, and fishing stocks, Elinor Ostrom’s important work Governing the commons (1990) presents an institutional framework for discussing the development and use of collective action with respect to environmental problems. In this article we discuss extensions of Ostrom’s approach to genes and genomes and explore its limits and usefulness. With the new genetics, we suggest, the biological gaze has not only been turned inward to the management and mining of the human body, also the very notion of the “biological” has been destabilized. This shift and destabilization, we argue, which is the result of human refashioning and appropriation of “life itself”, raises important questions about the relevance and applicability of Ostrom’s institutional framework in the context of what we call “genomic stuff”, genomic material, data, and information

The role of non-state actors in regime formation: Case study on Internet governance.

Many scholars argue that the Internet is a symbol of globalization and avoidance of state control. The Internet governance negotiations, which aims to establish an international regime for the Internet, is conducted through a multi-stakeholder setting associated with extensive involvement of non-state actors. This has been viewed as an indicator for a \u27diminishing state role\u27 in international relations; particularly, formation of international regimes. This study indicates that the role of states does not diminish in regime formation. States, especially great powers, are the main actors that set international principles, norms, rules and decision-making procedures. They create regimes in order to regulate international behavior as to global sectors, including the Internet. States deliberately enable certain non-state actors to participate in regime formation and governance of some global sectors, based on conscious perception of the utility and usefulness of such participation