Between Scylla and Charybdis: reconciling competing data management demands in the life sciences

Abstract

BackgroundThe widespread sharing of biologicaConcluding Comments: Teaching Responsible Datal and biomedical data is recognised as a key element in facilitating translation of scientific discoveries into novel clinical applications and services. At the same time, twenty-first century states are increasingly concerned that this data could also be used for purposes of bioterrorism. There is thus a tension between the desire to promote the sharing of data, as encapsulated by the Open Data movement, and the desire to prevent this data from ‘falling into the wrong hands’ as represented by ‘dual use’ policies. Both frameworks posit a moral duty for life sciences researchers with respect to how they should make their data available. However, Open data and dual use concerns are rarely discussed in concert and their implementation can present scientists with potentially conflicting ethical requirements.DiscussionBoth dual use and Open data policies frame scientific data and data dissemination in particular, though different, ways. As such they contain implicit models for how data is translated. Both approaches are limited by a focus on abstract conceptions of data and data sharing. This works to impede consensus-building between the two ethical frameworks. As an alternative, this paper proposes that an ethics of responsible management of scientific data should be based on a more nuanced understanding of the everyday data practices of life scientists. Responsibility for these ‘micromovements’ of data must consider the needs and duties of scientists as individuals and as collectively-organised groups.SummaryResearchers in the life sciences are faced with conflicting ethical responsibilities to share data as widely as possible, but prevent it being used for bioterrorist purposes. In order to reconcile the responsibilities posed by the Open Data and dual use frameworks, approaches should focus more on the everyday practices of laboratory scientists and less on abstract conceptions of data.

Introduction to the article collection ‘Translation in healthcare: ethical, legal, and social implications’

“…Using examples of clinical case scenarios, the authors argue for a reframing of uncertain test results and propose that healthcare providers directly engage clinical ambiguity as inherent to genomic medicine [30]. There is also a potential conflict between data-sharing and the concern to prevent data being used to promote bioterrorism, as Bezuidenhout and Morrison argue [31]. ‘Dual use’ policies address the latter need, but they are rarely discussed in comparison with the ideal of open access, as this paper does.…”

“…In addition to being a Guest Editor for this article collection, MM is a co- author on one of the articles in the collection [31] and shares an institutional affiliation to the Centre for Health, Law and Emerging Technologies at the University of Oxford in common with a number of a number of other authors of articles featured in this collection. All of the papers included in this collection were subject to independent peer review in line with BMC editorial policy and none of the Guest Editors were involved in overseeing the review of papers written by their colleagues.…”

The dual use of research ethics committees: why professional self-governance falls short in preserving biosecurity

“…Different items are listed in this context, such as ‘material, technology or knowledge’ [ 8 ] or ‘research, technologies and artefacts.’ [ 9 ]. Other authors also frame the misuse of biological and biomedical data as a DURC problem [ 10 ]. Whereas ‘immaterial’ subjects, such as knowledge, can often be transmitted easily and informally, more developed structures are necessary to remove technologies and artefacts from their original research context and use them for terrorist or military purposes.…”