Dana Mahr - Academia.edu (original) (raw)

Papers by Dana Mahr

DIGITAL HEALTH, 2022

Digital contact tracing appears as an ideal solution to tackle long-term economic damage due to n... more Digital contact tracing appears as an ideal solution to tackle long-term economic damage due to necessary lockdown measures during a pandemic. This essay shows that the challenge of balancing citizen's health and a functioning society is not just coming up today. Commercial centres were already in the Middle Ages worried about their economic prosperity and adopted isolation measures. Although there are much more data available today, pandemic preparedness remains constrained by temporal and spatial realities, thus limiting public health management to the national state. Based on the examples of China and Switzerland, we elaborate on how individual and collective needs can be balanced differently regarding the implementation of a digital contact tracing system. While China's Health Code App is close to social surveillance, Switzerland has turned away from Europe to develop its own Swiss solution due to disagreement about data protection. It becomes clear that the attempts to ...

Öffentliche Wissenschaft und gesellschaftlicher Wandel, 2018

When it comes to genes, we consider them almost automatically as something that belongs exclusive... more When it comes to genes, we consider them almost automatically as something that belongs exclusively to the spheres of science and biomedicine. We understand them as scientific concepts or treat them as epistemic objects—due to this, we describe them with an esoteric language using the vocabulary of “codes”, “traits”, “dispositions” or “susceptibility”. This chapter seeks to broaden our view as well as our vocabulary by uncovering a “lived perspective” of genes and genomics. For this I propose to analyse the narratives and experiences of those who are actually confronted with their genomes, patients and families who lead their lives in the light of geneticized diseases. For this I use (on an exemplary basis) a material from semi-structured interviews I undertook in the course of a project titled “the lived genome and chronic inflammatory bowel diseases”. The bioethicist Christoph Rehmann-Sutter and I conducted this project during the years 2013 and 2016 at the University of Luebeck (...

The use of general descriptive names, registered names, trademarks, service marks, etc. in this p... more The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use.

The knowledge of experience, 2021

This chapter asks why, on the one hand, science and technology are more successful than ever and ... more This chapter asks why, on the one hand, science and technology are more successful than ever and permeate all areas of life, but why, at the same time, more and more people are losing confidence in science and technology. One answer is that both scientific training and popularisation have epistemically conservative foundations that correlate with naive empiricism. This results in a situation where the inner complexity of scientific knowledge production is obscured. Revisiting epistemic diversity, especially the experiential knowledge of emergent concerned groups, might hold the key for a new, more inclusive, and participatory science for the twenty-first century.

The Lancet Child & Adolescent Health, 2021

Journal of Intellectual Property Law & Practice, 2020

At the peak of the coronavirus disease 2019 (COVID-19) pandemic, in March 2020, the Hospital of C... more At the peak of the coronavirus disease 2019 (COVID-19) pandemic, in March 2020, the Hospital of Chiari (Brescia) was in a state of emergency. The stock of valves needed to operate ventilators was dwindling and the manufacturer was unable to supply them at short notice. Massimo Temporelli, founder of Fablab Milano and one of the 3D printing pioneers in Italy, with the help of the local press, called makers to the rescue. Cristian Fracassi, a young engineer from Brescia, and his colleague Alessandro Romaioli, who works in the world of 3D printing, rose to the challenge. The original manufacturer of the valves was not very cooperative and withheld the design data and blueprints relying on European Union (EU) medical manufacturing regulations. Temporelli, Romaioli and Fracassi were not discouraged and quickly began the process of reverse engineering. The plastic part was re-measured, drawn as a 3D model and finally printed in less than a day with a material cost of less than 1 euro per piece (Fig. 1). Of course, the replica was not certified, but tests were successful, and the devices were subsequently used on more than 10 patients in Italy. Two weeks later, amidst an increasingly serious situation worldwide, in which many supply chains were disrupted, several other maker collectives followed the example of Brescia and supplied hospitals in many parts of the world with spare parts for life support technology. While, under normal circumstances, they would have to fear copyright and patent lawsuits or regulatory intervention, their help is now welcome. This article traces how, in the case of a global crisis, localized co-productive approaches to solve crisisinduced shortages are gaining increased acceptance and question the structural patterns and mechanisms of late capitalism. In the first section, we disentangle the relationships between the three main practical and symbolic contexts of 3D printing in the early 21st century (maker culture, prototyping and industrial contexts). We devote the second section to reflecting upon 3D printing against the backdrop of a social theoretical understanding of intellectual property (IP) rights. Against this backdrop, we explore, in the third section, how the current global crisis could change our understanding of IP and production methods.

Edinburgh University Press, 2018

From a medical perspective, the genome can today be used primarily as a source of health informat... more From a medical perspective, the genome can today be used primarily as a source of health information for diagnoses and prospective disease risk management. Gene therapy may be an option in the future. For scientists, the genome is the sum of an organism’s DNA molecules, which can be sequenced and used to explain heredity and development. What is a genome for those who have it in their bodies and who live it? How do they make sense of it? What meanings are associated with the genome in their lifeworlds, where identities are formed and decisions taken in personal, family and cultural contexts? It is a matter of perspectives. We all live a genome, but the questions that arise from people who live a genome are different from those raised by doctors and scientists who look at the genome as a functional part of cells. From the perspective of their own embodiment, people act

History and Philosophy of the Life Sciences, 2019

Dominant forms of contemporary big-data based digital citizen science do not question the institu... more Dominant forms of contemporary big-data based digital citizen science do not question the institutional divide between qualified experts and lay-persons. In our paper, we turn to the historical case of a large-scale amateur project on biogeographical birdwatching in the late nineteenth and early twentieth century to show that networked amateur research (that produces a large set of data) can operate in a more autonomous mode. This mode depends on certain cultural values, the constitution of specific knowledge objects, and the design of self-governed infrastructures. We conclude by arguing that the contemporary quest for autonomous citizen science is part of a broader discourse on the autonomy of scientific research in general. Just as the actors in our historical case positioned themselves against the elitism of gentlemen scientists, avant-garde groups of the twenty first century like biohackers and civic tech enthusiasts position themselves against the system of professional science-while "digital citizen science" remains to oscillate between claims for autonomy and realities of heteronomy, constantly reaffirming the classic lay-expert divide.

Sozialer Sinn, 2019

ZusammenfassungDie häufig auftretenden chronisch entzündlichen Darmerkrankungen (CED) Morbus Croh... more ZusammenfassungDie häufig auftretenden chronisch entzündlichen Darmerkrankungen (CED) Morbus Crohn und Colitis ulcerosa sind in den letzten Jahren von vorher prototypisch psychosomatischen Krankheiten zu teilweise genetisch erklärbaren Krankheiten umgedeutet und in ein biomedizinisches Paradigma genetischer Suszeptibilität eingeordnet worden. CED sind neben körperlichen Leiden auch mit sozialen Stigmata verbunden und schränken die Lebensqualität sowie die Lebenszufriedenheit von Betroffenen oft erheblich ein. In einer qualitativen Studie haben wir 57 semistrukturierte, teils narrative Interviews mit 42 PatientInnen und Angehörigen geführt und mit einem an der Grounded Theory sowie der Interpretativen Phänomenologischen Analyse orientierten Ansatz ausgewertet. Dieser Beitrag betrachtet das Material hinsichtlich der Frage, wie Betroffene und deren Familien der genetischen Erklärung von CED Sinn zuschreiben. Als einen Lebenskontext, der für diese Untersuchung besonders relevant ist, ha...

Science & Technology Studies, 2018

Since the late twentieth century, “citizen science” has become an increasingly fashionable label... more Since the late twentieth century, “citizen science” has become an increasingly fashionable label for a growing number of participatory research activities. This paper situates the origins and rise of the term “citizen science” and contextualises “citizen science” within the broader history of public participation in science. It analyses critically the current promises — democratisation, education, discoveries — emerging within the “citizen science” discourse and offers a new framework to better understand the diversity of epistemic practices involved in these participatory projects. Finally, it maps a number of historical, political, and social questions for future research in the critical studies of “citizen science”.

Wissenschafts Und Technikforschung, 2014

Mahr D. Citizen Science : partizipative Wissenschaft im späten 19. und frühen 20. Jahrhundert. Wi... more Mahr D. Citizen Science : partizipative Wissenschaft im späten 19. und frühen 20. Jahrhundert. Wissenschafts- und Technikforschung. Vol 12. Baden-Baden: Nomos; 2014

Zufallsbefunde bei molekulargenetischen Untersuchungen, 2015

Der Beitrag nimmt die im Jahr 2013 vorgelegten „Eckpunkte fur eine Heidelberger Praxis der Ganzge... more Der Beitrag nimmt die im Jahr 2013 vorgelegten „Eckpunkte fur eine Heidelberger Praxis der Ganzgenomsequenzierung“ der Projektgruppe EURAT zum Anlass, funf verschiedene, gegenwartig diskutierte Modelle zur Offenlegung von gesundheitsbezogenen Forschungsdaten an Studienteilnehmende zu untersuchen. Insbesondere werden die Verpflichtungen der Wissenschaftler im Kontext von Ganzgenomstudien gegenuber den Teilnehmenden diskutiert, soweit sie sich in der Gestaltung des „Informed Consent“ niederschlagen. Die Autoren identifizieren einen erhohten Partizipationsbedarf bei der Informierung von StudienteilnehmerInnen anlasslich der epistemischen Besonderheiten des im Zuge von Ganzgenomstudien erhobenen Wissens und formulieren zur Losung dieses Problems einige prozedurale Ideen.