Imme Petersen

Medialization of Science as a Prerequisite of Its Legitimization and Political Relevance

Sociologists have diagnosed an increasing ‘medialization’ of science—that is, an orientation towards the mass media, with the consequence that media criteria become relevant within science. The medialization of science is seen in this chapter as a consequence of the medialization of politics. Based on empirical surveys of German researchers, public information officers of science organizations and decision-makers in the political-administrative system, as well as a hermeneutical analysis of German press coverage, the authors analyse the manifestations and political impacts of medialization in the public communication of scientists and science organizations. Two biomedical fields—stem cell research and epidemiology—are used as case studies. Results of the empirical analyses support the hypothesis that the medialization of science, in so far as it guides the public communication strategies of scientific actors, increases the chances of scientific actors being noticed and taken seriously by the political-administrative system. Effects are seen in a contribution to the legitimization of science by reinforcing the perception of its social relevance and in improving the chances of scientific expertise becoming effective in policy-making.

Disclosure of individual research results in clinico-genomic trials: challenges, classification and criteria for decision-making

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.

Mass-Mediated Expertise as Informal Policy Advice

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.

Ethical and legal requirements for transnational genetic research

List of abbreviations 1. Introduction 1.1. From clinical to clinico-genomic research: New ethical and legal challenges 1.2. The ACGT project: Developing an ICT infrastructure 1.3. Aim and structure of the book 2. Ethical requirements 2.1. Introduction 2.2. Informed consent 2.3. The right to know, the duty to inform, and the quality of feedback 2.4. Summary of consolidated ethical requirements 2.5. Outlook: Ethical challenges in the european context 3. Legal requirements 3.1. Introduction 3.2. Theoretical analysis 3.3 Data protection within a trans-european research project - using the example of ACGT 3.4. Data protection framework within genetic research networks 4. Legal conclusion 5. References 6. Appendix 1- legal terminology 7. Appendix 2 - relevant regulation

Contextualizing Systems Biology

Systems biology is a new approach in the life sciences aiming at a more holistic understanding of biological entities. Developing out of the shortcomings of molecular biology in explaining complex and dynamic features of living systems, it can have far-reaching implications for science and society, as well as for our understanding of life. In order to understand the potentials and impacts of systems biology, a broad analysis of this new approach was undertaken from the social and cultural studies of science perspective, the results of which are laid down in this book. This chapter introduces the subject and our research concept and outlines the scope and the aims of the book. The fi rst section describes the rise of systems biology, its defi nitions and main aims. In a second step the conceptual approach of our analysis is laid out. We introduce the concept of context and context analysis and outline the cultural, practice-related, and societal environments, which were considered in our exploration of systems biology. The second section fi rst describes the methodical approaches applied in our study before it depicts the goals and hypotheses of this book and provides a short synopsis of the following chapters.

Informed consent, biobank research, and locality: Perceptions of breast cancer patients in three european countries

Comparative studies are missing that explore how socio-cultural and institutional circumstances influence patient comprehension and expectations regarding informed consent for current and future research on their tissue and data. This study compares how breast cancer patients in three European countries (the United Kingdom, Belgium, and Germany) who have consented to participate in tumor banking assess the given consent and the accompanying local contextual factors influencing it. Our survey demonstrates that only 59% of the patients in the British survey, but about 90% in the German and Belgian surveys, correctly recalled tissue and data donation for study purposes. Of those who remembered the study participation status correctly, about 90% had altruistic motives. At the same time, approximately half of the survey participants, or even 70% of the Belgians, expected personal benefit from research participation and information on cancer risk within the family. About half of the interviewees, but only 27% of the British participants, definitively wanted to be asked for re-consent for future research. Of the local contextual factors under study, participants’ appraisals of medical science and data protection were particularly pertinent. More culturally and contextually sensitive comparative research is needed to better understand patient attitudes toward research participation and tissue donation in the context of biobank research.

What Does the Child’s Assent to Research Participation Mean to Parents? Empirical Findings in Paediatric Oncology in Germany

National law in Germany requires that, whenever possible, children must provide their assent before participating in clinical research. However, there is still academic debate about many fundamental components of assent in order to address, for example, the age or stage of development respectively, at which children should be asked for assent. Furthermore, only a few studies approach the child’s assent to research participation empirically. We present empirical findings from a population-based survey in Germany on parents whose children were first diagnosed with childhood cancer in 2005. The survey’s primary objective was to evaluate what the child’s assent to research participation means to parents who gave consent on behalf of their minor child. In particular, we wanted to better understand what parents think about the requirement of seeking assent, how to assess the children’s competence to give assent and who should be in charge of it. Our empirical findings indicate that parents want to give children a voice in the decision-making regarding research participation. Even though the child’s competence to rationally understand the research protocol is primarily discussed in the literature as the most important precondition for a valid assent, the surveyed parents emphasise the child’s maturity instead. Given that maturity is regarded as a gradual process, parents want to have a say in assessing it. From this, it follows that parents develop and use a decision-making model that establishes appropriate roles, individual choices and responsibilities for the children, the parents and the physicians.

Return and Disclosure of Research Results: Parental Attitudes and Needs Over Time in Pediatric Oncology

Objectives To explore parental attitudes regarding the return and disclosure of research findings in pediatric cancer trials over time. Study design Two surveys were set up to evaluate the stability of parental attitudes. One survey was carried out among 581 parents whose child was diagnosed recently (response rate, 53.5%). A second, population‐based survey was set up with a time interval of 4 years between first cancer diagnosis and survey in which 1465 parents were included (response rate, 55.1%). Results Almost all surveyed parents stated a parental right to receive aggregate research results. Fifty‐five percent of the parents who recently participated in trials and 62% of those asked after a multiyear time interval thought that disclosure of individual findings is in any case necessary (P = .0034). The respondents wanted to restrict the duty to disclose study results to the child according to their notion of the childs well‐being, composed of childs maturity, impairment of the parent–child relationship, and the quality of the results. Conclusions Attitudes of parents regarding the return of research findings change over time. Shortly after diagnosis, parents are mainly interested in aggregate findings. Interest in individual findings appeared to increase as more time elapsed between cancer diagnosis and survey.

The impact of ICT on systems biology and how to assess it

The rise of systems biology has been deeply associated with the application of high-throughput technologies and the development of digital databases. Both have an important impact on how research is done today and what it achieves. The plethora and heterogeneity of data have caused a change in approaches of data handling and processing by using Information and Communication Technology (ICT). To facilitate data management and the access and sharing of data on biological structures and processes as well as to link different databases from disparate data sources, ICT infrastructures have been developed simultaneously with the emergence of systems approaches in biology. Using the concept of technoscience, I explore the relationship of data-driven technologies and scientific approaches in systems biology and how to assess it according to a new understanding of science assessment. The analysis shows that ICT infrastructures play an important role in the systems biology community, taking over all the relevant tasks regarding the integration, access and sharing of data. Therefore, ICT infrastructures are primarily regarded as service facilities to ease research activities. However, the separation of data management and data interpretation as two independent endeavours hides the fact that data-driven technologies fundamentally influence the epistemic status of data and cause epistemic shifts in research practices and processes. Accordingly, the frame of ICT for data management enables doing research, but it shapes the significance and meaning of data, practices and processes at the same time by defining how to handle data in ICT-driven science.

Systems Biology, Information Technology, and Cancer Research

The plethora and heterogeneity of data on biological processes have caused a change in approaches to data handling and processing by using high-performance computing and informatics. Infrastructures based on information and communication technology (ICT) have been developed to facilitate data management, access, and sharing of data on biological structures and processes on which systems biology is based. Although such infrastructures are essential for research and collaboration, they are often not regarded as being part of knowledge production. In contrast to this, we hypothesize that ICT infrastructures are not mere service facilities to support research activities, but enable, and restrict doing systems research at the same time. Based on a case study in systems cancer research, we argue that the understanding and modeling of biological systems is profoundly shaped by ICT and their underlying conceptualizations. In addition, individual scientists and research institutions cede the responsibilities of the activities associated with standardization, integration, and management of data. From the perspective of the sociological Actor-Network-Theory, our analysis also showed that such ICT infrastructures will become new powerful actors for knowledge production and within the knowledge-producing community of systems biology. Individual scientists and research institutions often neglect the challenges related to standardization, integration, and management of data that complicates and sometimes impedes innovation and translation of new developments into practice. This implies that standardization and integration in systems biology are as important as data generation.