[Air-L] IJoC Publishes Special Section Privacy at the Margins

Zack Marshall, Mr zack.marshall at mcgill.ca
Fri Mar 9 09:01:07 PST 2018

Thanks very much for this information. For those interested in this topic, I wanted to share our recent publication from the Journal of Medical Internet Research:

Open Availability of Patient Medical Photographs in Google Images Search Results: Cross-Sectional Study of Transgender Research

The abstract is below:
Background: This paper focuses on the collision of three factors: a growing emphasis on sharing research through open access publication, an increasing awareness of big data and its potential uses, and an engaged public interested in the privacy and confidentiality of their personal health information. One conceptual space where this collision is brought into sharp relief is with the open availability of patient medical photographs from peer-reviewed journal articles in the search results of online image databases such as Google Images.

Objective: The aim of this study was to assess the availability of patient medical photographs from published journal articles in Google Images search results and the factors impacting this availability.

Methods: We conducted a cross-sectional study using data from an evidence map of research with transgender, gender non-binary, and other gender diverse (trans) participants. For the original evidence map, a comprehensive search of 15 academic databases was developed in collaboration with a health sciences librarian. Initial search results produced 25,230 references after duplicates were removed. Eligibility criteria were established to include empirical research of any design that included trans participants or their personal information and that was published in English in peer-reviewed journals. We identified all articles published between 2008 and 2015 with medical photographs of trans participants. For each reference, images were individually numbered in order to track the total number of medical photographs. We used odds ratios (OR) to assess the association between availability of the clinical photograph on Google Images and the following factors: whether the article was openly available online (open access, Researchgate.net, or Academia.edu), whether the article included genital images, if the photographs were published in color, and whether the photographs were located on the journal article landing page.

Results: We identified 94 articles with medical photographs of trans participants, including a total of 605 photographs. Of the 94 publications, 35 (37%) included at least one medical photograph that was found on Google Images. The ability to locate the article freely online contributes to the availability of at least one image from the article on Google Images (OR 2.99, 95% CI 1.20-7.45).

Conclusions: This is the first study to document the existence of medical photographs from peer-reviewed journals appearing in Google Images search results. Almost all of the images we searched for included sensitive photographs of patient genitals, chests, or breasts. Given that it is unlikely that patients consented to sharing their personal health information in these ways, this constitutes a risk to patient privacy. Based on the impact of current practices, revisions to informed consent policies and guidelines are required.

Looking forward to seeing you at AoIR in Montreal,

Zack Marshall
Assistant Professor
School of Social Work
McGill University
T 514-398-5178
E zack.marshall at mcgill.ca 
Twitter @isthatethical 

-----Original Message-----
From: Air-L [mailto:air-l-bounces at listserv.aoir.org] On Behalf Of danah boyd
Sent: Monday, March 5, 2018 4:38 PM
To: AOIR Research <air-l at listserv.aoir.org>
Cc: Alice E. Marwick <amarwick at gmail.com>
Subject: [Air-L] IJoC Publishes Special Section Privacy at the Margins
Importance: High

(Alice and I are super excited to share this new special issue that we guest edited)

International Journal of Communication
Publishes a Special Section on Privacy at the Margins  
The International Journal of Communication is delighted to announce the publication of a new Special Section on “Privacy at the Margins” on March 1, 2018 which includes 10 articles from international scholars.

Privacy is considered a human right, but achieving privacy in a networked age requires a certain level of privilege. This Special Section on Privacy at the Margins brings together nine original social science papers and an editorial introduction to reveal the complex dynamics—such as coercion and consent—that underpin a range of privacy experiences around the world.
Edited by Alice E. Marwick, University of North Carolina at Chapel Hill and Data & Society and danah boyd, Microsoft Research and Data & Society, the papers presented in this Special Section of the International Journal of Communication use a diverse array of methodologies, both quantitative and qualitative, to address issues and domains including workplace surveillance, interpersonal privacy, and government privacy processes. In order to “interrogate what privacy looks like on the margins,” the section explores privacy experiences in India and in Appalachia, and among Aboriginal Australians and Azerbaijani youth. Several papers account for the skills needed to be successful at achieving privacy, and the trade-offs required by those who both gain and lose from being visible. Notably, these articles challenge basic assumptions underlying privacy research and invite scholars to consider new facets of the problem.
To access these papers, please Ctrl+Click on the article titles below for direct linking  or go to ijoc.org <http://ijoc.org/>.  We look forward to your feedback.
Understanding Privacy at the Margins — Introduction <http://ijoc.org/index.php/ijoc/article/view/7053/2293>
Alice E. Marwick, danah boyd
Refractive Surveillance: Monitoring Customers to Manage Workers <http://ijoc.org/index.php/ijoc/article/view/7041/2302>
Karen Levy, Solon Barocas
Not the Normal Trans Story: Negotiating Trans Narratives While Crowdfunding at the Margins <http://ijoc.org/index.php/ijoc/article/view/7049/2294>
Niki Fritz, Amy Gonzales
Being At Home With Privacy: Privacy and Mundane Intimacy Through Same-Sex Locative Media Practices <http://ijoc.org/index.php/ijoc/article/view/7050/2295>
Larissa Hjorth, Sarah Pink, Heather Horst
The Poverty of Privacy: Understanding Privacy Trade-Offs From Identity Infrastructure Users in India <http://ijoc.org/index.php/ijoc/article/view/7046/2296>
Janaki Srinivasan, Savita Bailur, Emrys Schoemaker, Sarita Seshagiri
Technology in Rural Appalachia: Cultural Strategies of Resistance and Navigation <http://ijoc.org/index.php/ijoc/article/view/7052/2297>
Sherry Hamby, Elizabeth Taylor, Allison Smith, Kimberly Mitchell, Lisa Jones
Concerns, Skills, and Activities: Multilayered Privacy Issues in Disadvantaged Urban Communities <http://ijoc.org/index.php/ijoc/article/view/7044/2298>
Xiaoqian Li, Wenhong Chen, Joseph D. Straubhaar
Privacy Versus Relatedness: Managing Device Use in Australia’s Remote Aboriginal Communities <http://ijoc.org/index.php/ijoc/article/view/7051/2299>
Ellie Rennie, Indigo Holcombe-James, Tyson Yunkaporta
Socially Mediated Visibility: Friendship and Dissent in Authoritarian Azerbaijan <http://ijoc.org/index.php/ijoc/article/view/7039/2300>
Katy E. Pearce, Jessica Vitak, Kristen Barta
Settler Governance and Privacy: Canada’s Indian Residential School Settlement Agreement and the Mediation of State-Based Violence <http://ijoc.org/index.php/ijoc/article/view/7042/2301>
Lara Fullenwieder, Adam Molnar
Larry Gross                                                  Arlene Luck
Editor                                                             Managing Editor

Alice E. Marwick and danah boyd
Guest Editors

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