The digital disruption of health research and the common good: an empirical-philosophical study.

Digital Good explores the ethical and societal challenges associated with the ’Googlisation of health’: the entrance of large consumer technology companies such as Alphabet, Apple and Amazon into the domain of health and biomedical research. Team members will conduct fieldwork to map, analyse and critically evaluate the different conceptions of the common good that motivate various stakeholders participating in research collaborations between consumer tech firms and public research institutions. Fieldwork will take place at various sites in Europe and in the USA. The empirical findings will be used to develop a normative framework for data governance in this context that can account for different and competing conceptions of the common good.

Publications

  • Tamar Sharon argues on openDemocracy.net that we should look beyond privacy, as there are wider issues at stake over Big Tech in Medicine.
  • New publication from Lotje Siffels, Tamar Sharon and Andrew Hoffman. Siffels et al. (2021) The participatory turn in health and medicine: The rise of the civic and the need to ’give back’ in data-intensive medical research. Humanities & Social Sciences Communications.
  • Lotje Siffels is co-author on Lanzing et al. (2021) It Takes Two to Techno-Tango: An Analysis of a Close Embrace Between Google/Apple and the EU in Fighting the Pandemic Through Contact Tracing Apps. Science as Culture.
  • Tamar Sharon publishes the article Sharon (2021) From hostile worlds to multiple spheres: towards a normative pragmatics of justice for the Googlization of health. Medicine, Health Care and Philosophy.
  • Andrew Hoffman and Tamar Sharon are co-authors on Hoffman et al. (2020) Towards a seamful ethics of Covid-19 contact tracing apps? Ethics and Information Technology.
  • Lotje Siffels publishes the article Siffels (2020) Beyond privacy vs. health: a justification analysis of the contact-tracing apps debate in the Netherlands. Ethics and Information Technology.
  • Tamar Sharon publishes the article Sharon (2020) Blind-sided by privacy? Digital Contact Tracing, the Apple/Google API and Big Tech’s Newfound Role as Global Health Policy Makers. Ethics and Information Technology.

Other highlights

  • The Digital Good team will organize a panel called ’Closing the loop of empirical ethics: away from normativity and critique and back again’ during the EASST conference, and Andrew Hoffman and Marthe Stevens also present other work, July 6-9, 2022.
  • Tamar Sharon is interviewed by De Volkskrant July 1, 2022.
  • Andrew Hoffman and Marthe Stevens present at the Data Power Conference in Bremen, June 22-24, 2022.
  • The Digital Good Research Group organizes a two-day expert meeting on the Sphere Transgression Watch, June 7-8, 2022.
  • The Digital Good Research Group (Tamar, Lotje, Marthe, Andrew, and Marjolein) hosts a two-day Solidarity Retreat at Soeterbeeck in Ravenstein, together with Ine van Hoyweghen’s Life Sciences & Society Lab from KU Leuven and Barbara Prainsack’s research group from the University of Vienna, May 30 and 31, 2022.
  • Tamar Sharon participates in an iHub-hosted a panel at the CPDP conference on “When privacy and data protection rule, what and who loses out?” which was co-organized by Tijs and included other contributions from Gloria González Fuster, Augustin Reyna, Lee Bygrave, and Sarah Eskens, May 23-25 2022.
  • Tamar Sharon attends the Public Spaces conference, where she delivers a keynote lecture on Sphere Transgression Watch and participated in a panel on the state of affairs in EU digital policymaking, May 17-18, 2022.
  • Tamar Sharon was interviewed by Vrij-Links, ‘De lange armen van Big Tech’ about the Sphere Transgression Watch tool.
  • The Digital Good team launches the Sphere Transgression Watch digital tool.
  • The Digital Good team will give a presentation called ’Digital Good: A descriptive and normative application of the orders of worth framework to the ’Googlization of health’ during the annual ESA conference, Sept. 2, 2021.
  • Marthe Stevens joins the Digital Good team in January 2021.
  • On November 25 2020, Tamar Sharon will give the annual Els Borst lecture on the loss of public values in the ongoing digitalization of health, titled ’Ontwrichtte zorg. Over het verlies van publieke waarden in de strijd om betere (digitale) gezondheid’.
  • The Digital Good team will organize a panel called ’Thinking beyond privacy in the ethics of human-technology relations: The case of COVID-19 contact tracing apps’ at the Philosophy of Human Technology Relations conference at Twente University, Nov. 4-7, 2020.
RESEARCH LINES

solidarity & justice

knowledge & expertise

PARTNERS

Centre for the Study of Contemporary Solidarity (CeSCoS)

SPONSORS

Sponsored by ERC Starting Grant ERC-2018-STG-804985 (2019-2023)

KEYWORDS

digital health

personalized medicine

big data

the common good

solidarity

data commons

Googlization of health

political economy of data use

philosophy of technology

critical data studies