Article ID: CBB939267013

An “Ethical Moment” in Data Sharing (January 2017)

unapi

This study draws on interviews with forty-nine members of a biomedical research community in the UK that is involved in negotiating data sharing and access. During an interview, an interviewee used the words “ethical moment” to describe a confrontation between collaborators in relation to data sharing. In this article, I use this as a lens for thinking about relations between “the conceptual and the empirical” in a way that allows both analyst and actor to challenge the status quo and consider other ethical possibilities. Drawing on actor network theory (ANT), I approach “the empirical” using the concepts of controversy and ontological uncertainty as methodological tools to tackle the problem of ethics. I suggest that these concepts also provide a bridge for understanding the ontological structure of the virtual and the actual, as described in Deleuze’s Difference and Repetition. While other science and technology studies scholars have sought to draw on Deleuze, this article addresses the integration of ethics and empirical research. It arises as a critical reaction to existing treatments of this problem as found in empirical ethics, especially in the sociology of bioethics, and indirectly in ANT texts.

...More
Citation URI
https://data.isiscb.org/isis/citation/CBB939267013/

Similar Citations

Article Nadine Levin; Sabina Leonelli; (March 2017)
How Does One “Open” Science? Questions of Value in Biological Research (/isis/citation/CBB290502459/)

Article Benedict Douglas; (January 2018)
The mtDNA of Human Rights (/isis/citation/CBB895767767/)

Book Colin Koopman; (2019)
How We Became Our Data: A Genealogy of the Informational Person (/isis/citation/CBB981384434/)

Article Charles Dupras; Katie Michelle Saulnier; Yann Joly; (October 2019)
Epigenetics, ethics, law and society: A multidisciplinary review of descriptive, instrumental, dialectical and reflexive analyses (/isis/citation/CBB595581322/)

Article Klaus Hoeyer; Aaro Tupasela; Malene Bøgehus Rasmussen; (May 2017)
Ethics Policies and Ethics Work in Cross-national Genetic Research and Data Sharing (/isis/citation/CBB887043244/)

Article Jaya Keaney; (2022)
The Racializing Womb: Surrogacy and Epigenetic Kinship (/isis/citation/CBB389875479/)

Article Jennifer S. Singh; (Marvh 2015)
Narratives of Participation in Autism Genetics Research (/isis/citation/CBB713757349/)

Article Margrit Shildrick; (2022)
Maternal–Fetal Microchimerism and Genetic Origins: Some Socio-legal Implications (/isis/citation/CBB586181231/)

Article Brian Salter; Yinhua Zhou; Saheli Datta; Charlotte Salter; (September 2016)
Bioinformatics and the Politics of Innovation in the Life Sciences: Science and the State in the United Kingdom, China, and India (/isis/citation/CBB590127808/)

Article Nadine Levin; Sabine Leonelli; Dagmara Weckowska; David Castle; John Dupré; (2016)
How Do Scientists Define Openness? Exploring the Relationship Between Open Science Policies and Research Practice (/isis/citation/CBB530775467/)

Article Adam Hedgecoe; (July 2017)
Scandals, Ethics, and Regulatory Change in Biomedical Research (/isis/citation/CBB888213703/)

Article Ilke Turkmendag; (January 2018)
It Is Just a “Battery”: “Right” to Know in Mitochondrial Replacement (/isis/citation/CBB838678540/)

Article Sara L. Ackerman; Katherine Weatherford Darling; Sandra Soo-Jin Lee; (March 2016)
Accounting for Complexity: Gene–environment Interaction Research and the Moral Economy of Quantification (/isis/citation/CBB257526872/)

Article Niccolò Tempini; Sabina Leonelli; (October 2018)
Concealment and discovery: The role of information security in biomedical data re-use (/isis/citation/CBB165158249/)

Article Astrid Mager; (April 2017)
Search engine imaginary: Visions and values in the co-production of search technology and Europe (/isis/citation/CBB569340330/)

Article Tresch, John; (April 2013)
Another turn after ANT: An interview with Bruno Latour (Discussion) (/isis/citation/CBB883617949/)

Article Edwards, Paul N.; Mayernik, Matthew S.; Batcheller, Archer L.; Bowker, Geoffrey C.; Borgman, Christine L.; (October 2011)
Science friction: Data, metadata, and collaboration (/isis/citation/CBB261989499/)

Authors & Contributors
Leonelli, Sabina
Levin, Nadine
Benedict Douglas
Weckowska, Dagmara
Greenhough, Beth
Ilke Turkmendag
Journals
Science, Technology and Human Values
Social Studies of Science
Bulletin of Science, Technology & Society
Publishers
University of Chicago Press
Concepts
Technoscience; science and technology studies
Life sciences
Ethics
Interviews
Data collection; methods
Privacy
People
Latour, Bruno
Time Periods
21st century
20th century, late
Places
Great Britain
Europe
Denmark
China
India
Institutions
Google
National Health Service (Great Britain)
Comments

Be the first to comment!

{{ comment.created_by.username }} on {{ comment.created_on | date:'medium' }}

Log in or register to comment