Das Recht auf Kopie

DuG Veranstaltung zur informationellen Selbstbestimmung in Bern, 26. Januar 2015

Prof. Thomas Gächter, Universität Zürich –  Das Recht auf Kopie

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Dr. Peter Grolimund, Teradata – Big Data zwischen Hype und Realität, Perspektiven im Gesundheitswesen

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January 22/23 2015 – Workshop on Citizen Science at ETH

Daten und Gesundheit is sponsoring the workshop on Citizen Science at ETH

In P4 (personalized, predictive, preventive, participatory) medicine the active participation of patients and citizens by sharing relevant personal health data (on drug side effects, environmental influences to health etc) is one of the four pillars this modern medicine. The active participation of citizens in medical research generates large opportunities and also challenges. The goal of this interdisciplinary workshop is to define the scope and potential of citizen science and to discuss how it will impact on traditional university driven biomedical research and research funding.

For the program and registration go to: www.citizenscience.ch

13th draft   Opportunities and Challenges of Citizen Science


Ernst Hafen, Institute of Molecular Systems Biology, ETH Zürich, Association Daten und Gesundheit Mike Martin, University Research Priority Program “Dynamics of healthy Aging”, UZH Kevin Schawinski, Institute for Astronomy, ETH Zürich Effy Vayena, Institute for Biomedical Ethics, UZH


ETH Zürich Critical Thinking Initiative University of Zürich: PhD Program in Biomedical Ethics and Law and URPP Dynamics of Healthy Aging Association Data and Health


Up until the end of the 19th century significant scientific discoveries were made by financially independent citizens (e.g., Charles Darwin). During the 20th century scientific research became the realm of universities and other large institutions. As a consequence, citizens developed an increasingly critical attitude towards science and its application (e.g., GMO, evolution, vaccination). Owing to new global communication and social interaction tools and the rapidly increasing digital transformation of data, knowledge is becoming easily accessible and citizen participation is again increasingly possible. Wikipedia as a crowd-sourced encyclopedia has outpaced classical knowledge compendia in a single decade. As a new form of science, direct participation of citizens in scientific projects is starting to appear. In the “Foldit” on-line computer game, citizens with no formal training in protein structure and biochemistry help to analyze the structure of proteins. Similarly, in “Zooniverse.org” millions of citizens classify galaxies, extract oceanic meteorological data from logbooks of ancient ships, or classify tumor samples. These are the very first manifestations of a revolution in scientific research that invites public participation or may even be initiated by the public. Citizen science, thus, offers a huge potential in engaging citizens in scientific research. Not only will this be important for the common good, it will also increase the public’s scientific literacy, which has generally been neglected owning to the retraction of science behind the walls of academia. Opportunities will further increase by citizen researchers contributing and analyzing their own personal health data. The vision of more participatory sciences looks bright and may in fact counteract to some degree the impending threat of the elimination of highly qualified jobs by ever faster and smarter computers and robots. However, citizen science also raises questions on the ethical conduct of such projects and it challenges established academic institutions, funding agencies and scientific publishers. What should be the oversight mechanism for citizen-initiated health research, how can scientists work with citizen-scientists without exploiting them and how should funding agencies determine the potential of citizen science projects? This workshop aims at providing an overview of the present state of citizen science, an outlook into the potential of citizen science in the future and the discussion of the opportunities and challenges associated with the re-emergence of this discipline for scientists, policy makers and funders.

Öffentliche Veranstaltung – Kontrolle über die persönlichen Daten und informationelle Selbstbestimmung

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Datum und Zeit: 26. Januar 2015, 16:30 – 18:30

Ort: Hotel Kreuz, Zeughausgasse 41, 3000 Bern

Im Anschluss an die Generalversammlung des Vereins Daten und Gesundheit lädt der Verein zu einer öffentliche Veranstaltung zum Thema Kontrolle über die persönlichen Daten und informationelle Selbstbestimmung ein. Die Veranstaltung ist öffentlich. Freier Eintritt.


Begrüssung und Einführung

Dr. Peter Grolimund, Senior Industry Consultant Life Sciences, Teradata
Big Data zwischen Hype und Realität – Perspektiven im Gesundheitswesen
Prof. Thomas Gächter, Rechtswissenschaftliches Institut der Universität Zürich
Das Recht auf Kopie – Grundvoraussetzung für die informationelle Selbstbestimmung
Dr. Peter Grolimund, Prof. Thomas Gächter, Prof. Ernst Hafen und NR Daniel Vischer
(Moderation: Mathis Brauchbar)

Daten und Gesundheit organisiert Session am IFAS-Forum am 23. Okt. 2014 in Zürich

An der IFAS – Fachmesse für den Gesundheitsmarkt – werden aktuelle Themen im Forum präsentiert, auf Fortbildungsniveau für Fachleute aus Spital, Arztpraxis und Pflege. Der Verein Daten und Gesundheit hat das Patronat für eine Session übernommen. Sie steht unter dem Titel: Nutzung persönlicher Gesundheitsdaten und informationelle Selbstbestimmung. Sie findet am Donnerstag, den 23. Oktober 2014, 10:30–12:30 statt. Weitere Informationen: http://www.ifas-messe.ch/htm/forumprogramm_donnerstag.htm