Digital Scientific Practice in Systems Medicine

The development of systems medicine has only been possible through the application of Information and Communication Technology (ICT) to handle the large volume and variety of data on health and disease. High-capacity databases and infrastructures based on ICT were established to support systematization and integration of data about complex physiological and pathological processes in cells and organisms. Although such infrastructures are essential for research and collaboration, they are often not regarded as being an integral part of the knowledge production itself. On the contrary, we argue that ICT is not only a science-supporting technology, but is deeply engraved in its scientific practices of knowledge generation. Findings supporting our argument are derived from an empirical case study in which we analysed the complex and dynamic relationship between systems medicine and information technology. The case under study was an international research project in which an integrated European ICT infrastructure was designed and developed in support of the systems oriented research community in oncology. By tracing the specific ways that systems medicine research produces, stores, and manages data in an ICT environment, this paper discusses the impact of ICT employed and to assess the consequences it may have for the process of knowledge production in systems medicine

Implizite Wertbezüge in der Technikfolgenabschätzung: Plädoyer für eine Praxis der reflexiven Normativität

Im Hinblick auf ihre Ziele, ihre philosophischen Vorannahmen und methodischen Vorgehensweisen ist die Technikfolgenabschätzung (TA) - wie andere Verfahren der systematischen Wissensproduktion auch - durch normative Vorentscheidungen geprägt. Anders als die auf ihren Untersuchungsgegenstand bezogenen ethischen und gesellschaftlichen Aspekte werden diese nicht immer explizit thematisiert, was ein Problem hinsichtlich der Transparenz und Neutralität der TA aufwirft. Das hier vorgeschlagene Konzept der "reflexiven Normativität" zielt darauf ab, die Wertbezüge der TA transparent zu machen und einseitige epistemisch-normative Selektivitäten zu vermeiden. Die dadurch ermöglichte Pluralität kann produktiv für die Weiterentwicklung der TA genutzt werden. Damit versteht sich das Konzept sowohl als Beitrag zur Theoriediskussion als auch zur Qualitätssicherung der TA.In terms of its objectives, philosophical presuppositions, and methodological procedures, technology assessment (TA) is - like other methods of systematic knowledge production too - characterized by normative selectivities. In contrast to ethical and societal aspects related to its object of investigation, they are not always explicitly addressed. This poses a problem regarding the transparency and neutrality of TA. The concept of "reflexive normativity" proposed here aims at making the value relations of TA transparent and avoiding epistemic-normative selectivities. The resulting plurality can be utilized productively to further develop TA. Therefore, the concept proposed here is a contribution to both theory discussion and quality assurance of TA

Geneva Statement on Heritable Human Genome Editing: The Need for Course Correction

As public interest advocates, policy experts, bioethicists, and scientists, we call for a course correction in public discussions about heritable human genome editing. Clarifying misrepresentations, centering societal consequences and concerns, and fostering public empowerment will support robust, global public engagement and meaningful deliberation about altering the genes of future generations