No abstract

Scientific policy advice is usually perceived as a formalized advisory process within political institutions. Politics has benefited from this arrangement because the science-based rationalization of policy has contributed to its legitimacy. However, in Western democratic societies, scientific expertise that is routinely mobilized to legitimate political positions has increasingly lost its power due to controversial expertise in the public sphere in particular within the mass media. As a consequence of the medialization of science, political decision makers are increasingly confronted with mass-mediated expertise. Empirical results of a qualitative survey among decision makers in the German political and administrative system, presented in this article, support the hypothesis that mass-mediated expertise has a significant impact on policy processes. Five functions of media coverage on science-based issues for policy making were identified. Mass-mediated expertise has therefore altered the established relations between scientific policy advisors and political decision makers and can be seen as informal policy advice complementing institutionalized advisory arrangements.

While an ethical obligation to report findings of clinical research to trial participants is increasingly recognised, the academic debate is often vague about what kinds of data should be fed back and how such a process should be organised. In this article, we present a classification of different actors, processes and data involved in the feedback of research results pertaining to an individual. In a second step, we reflect on circumstances requiring further ethical consideration. In regard to a concrete research setting--the one of clinico-genomic research--we discuss what kinds of difficulties have to be faced when returning individual research results to trial participants. In a last step, we elaborate on a stepwise model to trigger the individual feedback process. Hence, this paper gives guidance on how to feedback individual research results in a specific research setting and responds at the same time to new challenges in the debate on the duty to return individual research findings.

No abstract

The right to withdraw consent 32 2.3. The right to know, the duty to inform, and the quality of feedback 33 2.3.1. Access to personal information: a donor driven inquiry process 34 2.3.2. Feedback of research results: an investigator driven disclosure process 35 2.3.2.1. Informing about general research results 36 2.3.2.1.1. Ethical foundations 36 2.3.2.1.2. Practical challenges of feedback processes regarding general research results 37 2.

No abstract

Our results identified weak points and vulnerable subgroups in the parental consent process in pediatric oncology in Germany.

No abstract