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The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of the ethical implications (...) |
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Traditional conceptions of informed consent seem difficult or even impossible to apply to new technologies like biobanks, big data, or GMOs, where vast numbers of people are potentially affected, and where consequences and risks are indeterminate or even unforeseeable. Likewise, the principle has come under strain with the appropriation and monetisation of personal information on digital platforms. Over time, it has largely been reduced to bare assent to formalistic legal agreements. To address the current ineffectiveness of the norm of informed (...) |
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Both the European Union and the Council of Europe have a bearing on privacy in genomic databases and biobanking. In terms of legislation, the processing of personal data as it relates to the right to privacy is currently largely regulated in Europe by Directive 95/46/EC, which requires that processing be “fair and lawful” and follow a set of principles, meaning that the data be processed only for stated purposes, be sufficient for the purposes of the processing, be kept only for (...) |
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Genetic research has moved from Mendelian genetics to sequence maps to the study of natural human genetic variation at the level of the genome. This past decade of discovery has been accompanied by a shift in emphasis towards the ethical principles of reciprocity, mutuality, solidarity, citizenry and universality. |
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In times of global economic and political crises, the notion of solidarity is gaining new currency. This book argues that a solidarity-based perspective can help us to find new ways to address pressing problems. Exemplified by three case studies from the field of biomedicine: databases for health and disease research, personalised healthcare, and organ donation, it explores how solidarity can make a difference in how we frame problems, and in the policy solutions that we can offer. |
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In privacy self-management, people are expected to perform cost–benefit analysis on the use of their personal data, and only consent when their subjective benefits outweigh the costs. However, the ubiquitous collection of personal data and Big Data analytics present increasing challenges to successful privacy management. A number of services and research initiatives have proposed similar solutions to provide people with more control over their data by consolidating consent decisions under a single interface. We have named this the ‘consent intermediary’ approach. (...) |
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Genetic research attracts significant attention from the popular press, and often these representations are less than ideal, skewing toward hyperbole and promises of near-future benefits. Indeed, revolutionary language has permeated public discourse since the start of the Human Genome Project in the early 1990s. If the near constant parade of enthusiastic headlines is to be believed, we have been in the midst of a "genetic revolution" for over three decades, yet, the promised revolutionary changes never fully materialize, at least not (...) |
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This paper explores the politics of representing events in the world in the form of data points, data sets, or data associations. Data collection involves an act of seeing and recording something that was previously hidden and possibly unnamed. The incidences included in a data set are not random or unrelated but stand for coherent, classifiable phenomena in the world. Moreover, for data to have an impact on law and policy, such information must be seen as actionable, that is, the (...) |
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