Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...) research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance. (shrink)

Andrea Wiggins and John Wilbanks’ article (2019) presents us with a welcome overview of the neglected, novel ethical issues raised by the advent of citizen science in health and biomedical contexts. This contribution takes a rather different approach, focusing on a very specific (yet also overlooked) problem in this context - the ethical implications of self-administered genetic testing. This problem, however, is particularly illustrative of the “ethics gap” between traditional medical settings and new public-driven scientific practices, emphasized by Wiggins and (...) Wilbanks in their more wide-ranging treatment. (shrink)

In "The Rise of Citizen Science in Health and Biomedical Research," Wiggins and Wilbanks present an analysis of the ethics of citizen science (Wiggins and Wilbanks 2019). The breadth of the analysi...

With the Internet’s integration into mainstream society, online technologies have become a significant economic factor and a central aspect of everyday life. Thus, it is not surprising that news providers and social scientists regularly offer media-induced visions of a nearby future and that these horizons of expectation are continually expanding. This is true not only for the Web as a traditional media technology but also for 3D printing, which has freed modern media utopianism from its stigma of immateriality. Our article (...) explores the fundamental semantic structures and simplification patterns of popular media utopias and unfolds the thesis that their resounding success is based on their instantaneous connectivity and compatibility to societal discourses in a broad variety of cultural, political, or economic contexts. Further, it addresses the social functions of utopian concepts in the digital realm. (shrink)

Open science hardware (OSH) are prototypes of laboratory instruments that use open source hardware to extend the purely epistemic (improving knowledge about nature) and normative (improving society) ideals of science and emphasize the importance of technology. They remind us of Zilsel’s 1942 thesis about the artisanal origins of science and instrument making that bridged disciplinary and social barriers in the 16th century. The emphasis on making, tinkering, and design transcends research, reproducibility, and corroboration in science and pushes to the forefront (...) educational, emancipatory, and aesthetic and exploratory uses. I will use two recent projects, OpenDrop electrowetting platform and Open Source Estrogen that make but also reflect OSH’s playful, expressive, and performative strategies and define the present practices as “artisanal science.” These hybrid and ambiguous practices bridge divides between present disciplines and skills but they also define science as an everyday activity directly connected to the private and public interests of the citizens. To describe this epistemic and normative ambiguity of artisanal science, I employ Hannah Arendt’s 1958 critique of homo laborans and homo faber and claim that science artisans (citizen scientists, geeks, makers, and hackers) offer an alternative to professionalization of science as practiced in the university and R&D laboratories. Science artisans design and build instruments to engage in civic “vita activa” over instruments but also leisurely “otium” outside of the work and science labor. OSH in this sense empowers individuals and communities to explore new connections between scientific practices, public actions, and private interests (leisure). The science artisans strive for and explore sovereignty, dignity, and freedom in an age immersed in science and technology controversies by bridging the divides between art, science, engineering, and humanities. (shrink)

Since 2008, we witness the emergence of the Do-It-Yourself Biology movement, a global movement spreading the use of biotechnology beyond traditional academic and industrial institutions and into the lay public. Practitioners include a broad mix of amateurs, enthusiasts, students, and trained scientists. At this moment, the movement counts nearly 50 local groups, mostly in America and Europe, but also increasingly in Asia. Do-It-Yourself Bio represents a direct translation of hacking culture and practicesfrom the realm of computers and software into the (...) realm of genes and cells. Although the movement is still in its infancy, and it is even unclear whether it will ever reach maturity, the contours of a new paradigm of knowledge production are already becoming visible. We will subsequently sketch the economic, the epistemological and the ethical profile of Do-It-Yourself Bio, and discuss its implications and also its ambivalences. (shrink)

The emergence of Do-It-Yourself science movements is becoming a topic widely discussed in academia and policy, as well as by the general public and the media. While DIY approaches enjoy increasing diffusion even in official research, different social actors frequently talk about them in different ways and circumstances. Interaction and negotiation processes amongst actors define the premises upon which different conceptualisations of DIY science are deployed.

Since 2008, we witness the emergence of the Do-It-Yourself Biology movement, a global movement spreading the use of biotechnology beyond traditional academic and industrial institutions and into the lay public. Practitioners include a broad mix of amateurs, enthusiasts, students, and trained scientists. At this moment, the movement counts nearly 50 local groups, mostly in America and Europe, but also increasingly in Asia. Do-It-Yourself Bio represents a direct translation of hacking culture and practicesfrom the realm of computers and software into the (...) realm of genes and cells. Although the movement is still in its infancy, and it is even unclear whether it will ever reach maturity, the contours of a new paradigm of knowledge production are already becoming visible. We will subsequently sketch the economic, the epistemological and the ethical profile of Do-It-Yourself Bio, and discuss its implications and also its ambivalences. (shrink)