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

Revisiting digital technologies: envisioning biodigital bodies

In this paper the contemporary practices of human genomics in the 21st century are placed alongside the digital bodies of the 1990s. The primary aim is to provide a trajectory of the biodigital as follows: First, digital bodies and biodigital bodies were both part of the spectacular imaginaries of early cybercultures. Second, these spectacular digital bodies were supplemented in the mid-1990s by digital bodywork practices that have become an important dimension of everyday communication. Third, the spectacle of biodigital bodies is in the process of being supplemented by biodigital bodywork practices, through personal or direct-to-consumer genomics. This shift moves a form of biodigital communication into the everyday. Finally, what can be learned from putting the trajectories of digital and biodigital bodies together is that the degree of this communicative shift may be obscured through the doubled attachment of personal genomics to everyday digital culture and high-tech spectacle.Keywords: genomics, biodigital, bodies, spectacle, everyda

Emerging ethical issues regarding digital health data on the world medical association draft declaration on ethical considerations regarding health databases and biobanks

This is the final version of the article. Available from the publisher via the DOI in this record.All authors are affiliated with the Data and IT in Health and Medicine Lab which is coordinated at the Department of Social Science, Health & Medicine, King’s College London (datahealthmedicine.wordpress.com). This article builds upon a response submitted by the Lab to the World Medical Association consultation on the draft Declaration on Ethical Considerations regarding Health Databases and Biobanks in June 2015. DOI: 10.13140/RG.2.1.3334.4163. Barbara Prainsack is a member of the Navigating Knowledge Landscapes (NKL) network led by Anna Lydia Svalastog (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4576744/)

Strengthening Cross-border Law Enforcement Cooperation: the Prüm Network of Information Exchange

The Prüm network was established to provide mechanisms and the infrastructure to achieve a closer cooperation between the EU member states in combating terrorism, organised crime and illegal immigration through the cross border exchange of DNA profiles, fingerprints and vehicle registration data. While Prüm offers clear benefits for cross-border policing, it continues to present challenges of a technical and scientific nature as well as legal, ethical and socioeconomic concerns. This article reviews these challenges as well as the existing safeguards. It argues that, in order to achieve Prüm benefits and maximise its potential, it is important to enhance the necessary dialogue and cooperation between member states so as to confront the above concerns and address challenges posed by Prüm through balanced measures

APPLaUD: access for patients and participants to individual level uninterpreted genomic data.

BACKGROUND: There is a growing support for the stance that patients and research participants should have better and easier access to their raw (uninterpreted) genomic sequence data in both clinical and research contexts. MAIN BODY: We review legal frameworks and literature on the benefits, risks, and practical barriers of providing individuals access to their data. We also survey genomic sequencing initiatives that provide or plan to provide individual access. Many patients and research participants expect to be able to access their health and genomic data. Individuals have a legal right to access their genomic data in some countries and contexts. Moreover, increasing numbers of participatory research projects, direct-to-consumer genetic testing companies, and now major national sequencing initiatives grant individuals access to their genomic sequence data upon request. CONCLUSION: Drawing on current practice and regulatory analysis, we outline legal, ethical, and practical guidance for genomic sequencing initiatives seeking to offer interested patients and participants access to their raw genomic data

Enabling posthumous medical data donation: a plea for the ethical utilisation of personal health data

This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, in a way similar to how they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute. Ten arguments are provided to support the need to foster posthumous medical data donation. Two major risks are also identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to ask for informed consent is rejected, and it instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks providing five foundational principles for ethical medical data donation; and suggesting a draft for such a code

Fifteenth Century Problems for the Twenty-First Century Gift: Human Tissue Transactions in Ethnically Diverse Societies

The language of the ‘gift’ continues to be drawn upon in attempts to encourage altruistic organ and tissue donation. My aim here is to consider the anxieties that come into focus when this rhetoric is deployed in the context of ethnic minorities and, moreover, their donation practices are situated within universalistic discourses of charity and the gift. The article considers ideas of the body, debt, obligation, relationality, and solidarity, and how these fit within the overarching projects of society, modernity, and democracy when the market figures as an ever more prominent feature of such projects. Drawing on a variety of examples, the piece reflects on the movement of tissue across ethnically and culturally marked corporeal boundaries and highlights the tensions that arise from refusal as well as acceptance of such transactions

Forensic DNA databases in European countries: is size linked to performance?

The political and financial investments in the implementation of forensic DNA databases and the ethical issues related to their use and expansion justify inquiries into their performance and general utility. The main function of a forensic DNA database is to produce matches between individuals and crime scene stains, which requires a constant input of individual profiles and crime scene stains. This is conditioned, among other factors, by the legislation, namely the criteria for inclusion of profiles and the periods of time and conditions for their retention and/or deletion. This article aims to provide an overview of the different legislative models for DNA databasing in Europe and ponder if wider inclusion criteria – and, consequently, database size – translates into more matches between profiles of crime scene stains and included individuals (performance ratio). The legislation governing forensic DNA databases in 22 countries in the European Union was analysed in order to propose a typology of two major groups of legislative criteria for inclusion/retention of profiles that can be classified as having either expansive effects or restrictive effects. We argue that expansive criteria for inclusion and retention of profiles do not necessarily translate into significant gains in output performance.MES -Ministry of Education and Science(SFRH/BPD/34143/2006)info:eu-repo/semantics/publishedVersio