Participatory Big Data Ethics

Over the last year I have been working with Chris Clifton (Computer Science) and Dan Kelly (Philosophy) on our project Big Data Ethics: detecting bias in data collection, algorithmic discrimination and ‘informed refusal. a two-year project sponsored by the Breaking Through Grand Challenges grant (funded by Andrew W. Mellon Foundation).  My part of the project is to explore the possibility of a participatory approach to big data ethics. I will be sharing some preliminary results of this work at the 2018 Society for Applied Anthropology Meetings in Philadelphia, PA this Spring.

Questioning, Applying Ethics (F-130) FRIDAY 3:30-5:20  Regency C2
CHAIR: ROARK, Kendall (Purdue U)
PARISI, Emary and TOULSON, Ruth (MICA) From Plasma to Plastic: The Ethics of Paid Plasma Donation in Baltimore
THORPE, Marian (Rutgers U) Asserting the Right to Refuse: Indigenous Free, Prior, and Informed Consent in Western Panama
ROARK, Kendall (Purdue U) Participatory Big Data Ethics: Against AI Gaydar and Other Creepy Machines
AZADEGAN, Shadi (CO State U) and KONINGSTEIN, Manon (Sivin Communications) Participatory Video for Two-Way Communication in Research for Development
HA, JeongSoo (Independent) Visual Anthropology of Child Labor in Progressive Era New Jersey


Updates on Maternal Child Health Data Project

Our project Bridging the Research Data Divide (see Data Detectives post below) has come to an end and we are starting to share outputs.

The team has submitted an article currently under review with an open-access peer reviewed journal (more updates soon).


Two of my 2016 talks available on YouTube: ‘Feminism & Critical Data Studies’ and ‘Data Work’

Feminism & Critical Data Studies. TransformSTEM & the Women’s, Gender & Sexuality Studies Program International Women’s Day 2016 (invited lecture) March 1, 2016. Available at:

Data Work: research data services in the U.S. and Canada (invited keynote) for the 2016 University of Massachusetts and New England Area Librarian e-Science Symposia, “Library Research Data Services:    Putting Ideas into Action” (April 6, 2016), Available at:



Data Management, Sharing and Researcher Workflows

The Council on Library and Information Resources (CLIR) recently posted a two-part In:thinking blog by Vessela Ensberg and myself on data management, data sharing and researcher workflows. Ensberg’s post focuses on the biomedical lab environment and my piece focuses on qualitative / ethnographic fieldwork. This series is based on our own experience as researchers and our work with libraries as part of the CLIR / DLF Postdoctoral Fellows in Data Curation for the Sciences and Social Sciences. We first presented a two-hour seminar on the subject of researcher workflows at UCLA Libraries back in September of 2014.

Data Detective?

Excited to start a new project with Kathryn Hammond Baker and Emily Gustainis (Harvard Center for the History of Medicine) and Sharon Farnel (University of Alberta Libraries) entitled Bridging the Research Data Divide: Rethinking Long-term Value and Access for Historical and Contemporary Maternal, Infant and Child Research.

The project officially starts in June, but planning is under way.  The University of Alberta News posted an article about the project centered on UA libraries and the MICYRN Network that mentions my postdoctoral research study (Curating Risk, Mediating Access). They also call us “data detectives”. Should I add that to my resume?

The initiative builds on the post-doctoral research of Kendall Roark, a scholar at the U of A and a co-investigator on the project, along with UAL metadata librarian Sharon Farnel. Sponsored jointly by UAL and CLIR, Roark’s work focuses on investigating data sharing practices, norms and policies in health science. Through CLIR, UAL connected with Harvard, an institution experienced in processing sensitive research data. – See more at:

Emily Gustainis who is managing the overall CLIR Hidden Collections grant summed up the project nicely in the CHoM blog back in December.

The project aims to help close a significant gap in current instructional and operational approaches to the long-term preservation of research data. Such approaches generally stop at the deposit of research data into a repository for short term retention. This type of approach does not take into consideration: 1) the long-term historical value of research data; 2) interdisciplinary research; 3) how to describe research data for discoverability; 4) the need to identify and describe contextualizing manuscript collections that support the interpretation and reuse of data; 5) the need to describe data and records in advance of transferring the data to institutional repositories and special collections environments; and 6) how to make researchers aware of the existence of research data useful to their arenas of inquiry, even when collections contain protected information, such as HIPAA identifiers. – See more at:

Great to see this project coming together!

Digital & Visual Ethics Panel/Web Conference – AAA Meetings in December 2014

I am participating in a two-part panel entitled, Digital Media and the Production of Anthropology: A Discussion on Visual Ethics at the upcoming American Anthropology Meetings in Washington, D.C. this December. There is a page on the Society for Visual Anthropology site  with abstracts of the talks and links for the livestream conference. You can log-in to the AAA site for all abstracts now if you have registered for the conference. In the meantime here is my updated abstract.

Curating Risk, Mediating Access: Digital Ethics for Visual Data, Kendall Roark (University of Alberta)

Privacy protections and open access/open data are at times framed as competing interpretations of the public good. However, there are indications that both public opinion and the existing policy framework reflect confusion about how to conceptualize privacy within an open access digital environment. These debates have been productive, leading to the adoption of emergent technologies and forms of data governance which are used to both restrict and open access to sensitive research data. I look at two case studies from the Curating Risk, Mediating Access project which seeks to identify innovate practices around data sharing in clinical and health research in Canada. What does it mean to operationalize visual ethics in an open access digital environment? How might we pair existing visualization techniques and audio-visual formats with emerging conceptual models of the semantic web? How might we use linked open data and contextual (including rights and access) metadata to reshape how people locate and interact with digital objects today?


Reviewed By: Society for Visual Anthropology
Organizers:  Sara E Perry (University of York) and Jonathan S Marion (University of Arkansas)
Chairs:  Sara E Perry (University of York) and Jonathan S Marion (University of Arkansas)


Saturday, December 6, 2014: 9:00 AM-10:45 AM

9:00 AM Digital Media and Visual Ethics, Sara E Perry (University of York)
9:15 AM CGI Child Pornography, Carcerality, and Queer Viewing, Mitali Thakor (Massachusetts Inst of Technology)
9:30 AM Curating Risk, Mediating Access: Digital Ethics for Visual Data, Kendall L Roark (University of Alberta)
10:15 AM Can the Border Wall be Photographed? Public Anthropology and National Security Miguel Diaz-Barriga (University of Texas-Pan American) and Margaret E Dorsey (The University of Texas – Pan American)
 10:30 AM Discussion
Saturday, December 6, 2014: 2:30 PM-4:15 PM
3:15 PM Images in the Cloud, Ethics on the Ground Barbara G Hoffman (Cleveland State University)
3:45 PM Discussion
4:00 PM Discussion