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Ghost Data Journeys of the Gender Health Gap

DiMarco, Marina (2023) Ghost Data Journeys of the Gender Health Gap. Master's Thesis, University of Pittsburgh. (Unpublished)

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Evvy and Juno Bio, two femtech (female technology) microbiome sequencing startups, strategically deploy a gender health data gap, or an absence of data about women’s health. These companies position their consumers as contributors to a grassroots movement toward gender health equity defined in terms of closing this gap. I argue that the best way to understand Evvy and Juno’s use of this non-existence of data is in terms of C. Thi Nguyen’s notion of value capture, which occurs when our nuanced values are replaced with simpler versions. Here, both startups and policymakers collapse the complex and contradictory value judgments of feminist politics into problems to be solved by individual health consumption, data donation, and femtech’s growing share of the biotechnology market.

As these data travel across social and epistemic contexts, they represent what Sabina Leonelli has called a data journey. Yet in this case the data in question do not exist. These are journeys instead of what I call “ghost data,” reflecting a broader preoccupation with possible data, and problematizing ignorance about sex differences. Tracing ghost data journeys in femtech reveals conflicting epistemic and social roles for data in private and public women’s health research programs. These roles flicker in and out of focus in light of shifting and contradictory understandings and politics of women’s health. I argue that this instance of value capture holds broader lessons for both philosophers of science and women’s health advocates: value capture is a form of opacity about values in science that can both influence and occlude our understanding of the pursuitworthiness of inquiry.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
DiMarco, Marinamarina.dimarco@pitt.edumrd96
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairDietrich, Michaelmrd98@pitt.edumrd98
Committee MemberDeem,
Committee MemberGreen,
Date: 6 September 2023
Date Type: Publication
Defense Date: 22 June 2023
Approval Date: 6 September 2023
Submission Date: 25 July 2023
Access Restriction: 2 year -- Restrict access to University of Pittsburgh for a period of 2 years.
Number of Pages: 62
Institution: University of Pittsburgh
Schools and Programs: Dietrich School of Arts and Sciences > Bioethics
Degree: MA - Master of Arts
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: femtech, value capture, genomics, data ethics
Date Deposited: 06 Sep 2023 14:15
Last Modified: 06 Sep 2023 14:15

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  • Ghost Data Journeys of the Gender Health Gap. (deposited 06 Sep 2023 14:15) [Currently Displayed]


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