In European science and technology policy, various styles have been developed and institutionalised to govern the ethical challenges of science and technology innovations. In this paper, we give an account of the most dominant styles of the past 30 years, particularly in Europe, seeking to show their specific merits and problems. We focus on three styles of governance: a technocratic style, an applied ethics style, and a public participation style. We discuss their merits and deficits, and use this analysis to (...) assess the potential of the recently established governance approach of ‘Responsible Research and Innovation’. Based on this analysis, we reflect on the current shaping of RRI in terms of ‘doing governance’. (shrink)

In European science and technology policy, various styles have been developed and institutionalised to govern the ethical challenges of science and technology innovations. In this paper, we give an account of the most dominant styles of the past 30 years, particularly in Europe, seeking to show their specific merits and problems. We focus on three styles of governance: a technocratic style, an applied ethics style, and a public participation style. We discuss their merits and deficits, and use this analysis to (...) assess the potential of the recently established governance approach of ‘Responsible Research and Innovation’ (RRI). Based on this analysis, we reflect on the current shaping of RRI in terms of ‘doing governance’. (shrink)

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 (...) so long as is necessary to achieve those purposes, and be kept securely and only in an identifiable state for such time as is necessary for the processing. The European privacy regime does not require the de-identification of personal data used in genomic databases or biobanks, and alongside this practice informed consent as well as governance and oversight mechanisms provide for the protection of genomic data. (shrink)

South Africa’s groundbreaking constitution explicitly confers a right of access to sufficient water. But the country is officially ‘water-stressed’ and around 10 % of the population still has no access to on-site or off-site piped or tap water. It is evident that a disconnect exists between this right and the reality for many; however the reasons for the continuation of such discrepancies are not always clear. While barriers to sufficient water are myriad, one significant factor contributing to insufficient and unpredictable (...) access to water is the high percentage of broken water pumps. Previous studies have reported that between 20 and 50 % of all hand operated water pumps installed on the African continent are broken, or out of use. Monitoring and maintenance of pumps, which in South Africa is the responsibility of local municipalities is often ineffective, in part due to the distances between municipal centres and rural communities and the consequent costs of site visits, as well as breakdowns within the local bureaucratic system. The emergence of new telemetry tools that can remotely monitor water applications constitutes a novel and cost-efficient alternative to undertaking regular sites visits. Sustainable, appropriate, low-cost telemetry systems are emerging that could be used to monitor the operational performance of water pumps, or a wide range of other field parameters, and to communicate this information swiftly and cheaply to water service providers, using SMS messages. Data on the performance of water pumps could also be made available to the public online. This is an example of how ICT can be used for water resources management and environmental regulation, as well as in the governance of socio-economic rights: helping to optimize water allocation by improving communication and strengthening accountability. (shrink)

Patientenmobilität und grenzüberschreitende Gesundheitsversorgung sind alltägliche Phänomene in der Europäischen Union (EU). Im Jahr 2011 hat die EU eine Richtlinie erlassen, um in diesem Kontext Rechtssicherheit herzustellen. Bisher gibt es keine umfassenden systematischen Studien über ethische Aspekte grenzübergreifender Gesundheitsversorgung. In dieser Arbeit werden die rechtlichen Entwicklungen der grenzübergreifenden Gesundheitsversorgung dargestellt und die in der Literatur vereinzelt erwähnten ethisch relevanten Aspekte heuristisch und auf Patiententypologien aufbauend systematisch inventarisiert und diskutiert. Es zeigt sich, dass die Möglichkeit der Patientenmobilität und die damit vor (...) allem verbundenen Finanzierungsregelungen die Autonomie einiger Patienten sicherlich verbessern kann. Allerdings können wohl nicht alle Patienten Versorgungsverbesserungen erwarten. Im Gegenteil können sogar negative Konsequenzen für einige Patienten folgen, was vor allem aus gerechtigkeitstheoretischen Überlegungen kritisch zu sehen ist. (shrink)

ZusammenfassungPatientenmobilität und grenzüberschreitende Gesundheitsversorgung sind alltägliche Phänomene in der Europäischen Union. Im Jahr 2011 hat die EU eine Richtlinie erlassen, um in diesem Kontext Rechtssicherheit herzustellen. Bisher gibt es keine umfassenden systematischen Studien über ethische Aspekte grenzübergreifender Gesundheitsversorgung. In dieser Arbeit werden die rechtlichen Entwicklungen der grenzübergreifenden Gesundheitsversorgung dargestellt und die in der Literatur vereinzelt erwähnten ethisch relevanten Aspekte heuristisch und auf Patiententypologien aufbauend systematisch inventarisiert und diskutiert. Es zeigt sich, dass die Möglichkeit der Patientenmobilität und die damit vor allem (...) verbundenen Finanzierungsregelungen die Autonomie einiger Patienten sicherlich verbessern kann. Allerdings können wohl nicht alle Patienten Versorgungsverbesserungen erwarten. Im Gegenteil können sogar negative Konsequenzen für einige Patienten folgen, was vor allem aus gerechtigkeitstheoretischen Überlegungen kritisch zu sehen ist. (shrink)

In this article we explore the ethical issues raised by permitting patients to pay for participation in clinical trials, and discuss whether there are any categorical objections to this practice. We address key considerations concerning payment for participation in trials, including patient autonomy, risk/benefit and justice, taking account of two previous critiques of the ethics of P4. We conclude that such trials could be ethical under certain strict conditions, but only if other potential sources of funding have first been explored (...) or are unavailable. (shrink)

Ideally, guidelines reflect an accepted position with respect to matters of concern, ranging from clinical practices to researcher behaviour. Upon close reading, authorship guidelines reserve authorship attribution to individuals fully or almost fully embedded in particular studies, including design or execution as well as significant involvement in the writing process. These requirements prescribe an organisation of scientific work in which this embedding is specifically enabled. Drawing from interviews with nutrition scientists at universities and in the food industry, we demonstrate that (...) the organisation of research labour can deviate significantly from such prescriptions. The organisation of labour, regardless of its content, then, has consequences for who qualifies as an author. The fact that fewer food industry employees qualify is actively used by the food industry to manage the credibility and ownership of their knowledge claims as allonymous science: the attribution of science assisted by authorship guidelines blind to all but one organisational frame. (shrink)