February 8, 2018: PERVADE and Katie Shilton Visit University of California Irvine

This past weekend, the PERVADE Team came together for their first principle investigator meeting at the University of California Irvine, the home institution of Matthew Bietz. While the weather was a beautiful 80 degrees, the team was inside updating each other on their projects, troubleshooting research roadblocks, and planning out the next 5 months of research.

This semester’s research agenda includes developing a “Yell at an Ethicist” Booth at conferences, building vignettes to prompt IRB manager focus groups at PRIM&R, exploring ethical considerations in data management plans, and exploring ethics curricula offered in computer science programs across the US.

The Department of Informatics at Irvine was kind enough to host a lunch with their PhD students who are exploring research questions from health information system design to data analytics for smart cities. Furthermore, the Department of Informatics hosted a panel discussion for the PERVADE team to share their research goals and take questions from the audience. The event can be viewed below.

Thank you once again UCI for hosting the PERVADE Team!

December 22, 2017: Privacy by Design Workshop Accepted to Engaged Scholarship for Ethics and Responsible Innovation in STEM Fields

We are excited to announce that Donal Heidenblad, Mary Kendig, Katie Shilton & Susan Winter recently had a workshop accepted to the Engaged Scholarship for Ethics and Responsible Innovation in STEM Fields Workshop at James B. Hunt, Jr. Library, NC State University, Raleigh, NC.

Their workshop is titled: The Privacy by Design Simulation: Ethics Education through Experiential Learning. The project team discovered that teaching the engineers who curate sensitive and personal data to make wise ethical decisions is a critical challenge for ethics education. Their poster presents the Privacy by Design Simulation: a role-playing game designed to teach information ethics through experiential learning. Donal believes that information ethics education can be improved by engaging students in real-world activities that mimic how software developers actually encounter and debate ethics in professional settings. This project tests their approach through deployment and evaluation of an ethics education role-playing game.

The 1.5 day workshop from March 14-15, 2018 will include a keynote presentation, poster presentations, interactive panels on engaged learning and scholarship, and breakout discussion sessions. Dr. Susan Winter will be conducting the workshop for the team! Register for the workshop online here: https://research.ncsu.edu/ges/events/cce-workshop-2018/

November 9, 2017: Donal & Jenny Prepare for Classroom Simulation

Over the past few months, Donal Heidenblad and Jenny Siegel have been working tirelessly to prepare their mobile development simulation for execution November 13 – 17. Students participating in the class and simulation will explore ethics surrounding mobile health data and data collection through a Dungeons & Dragons like scenario. As SIMCON (Dungeon Master), Jenny will direct students to explore literature, policy, and standards discussing requirements for deploying mobile apps collecting personal information and health data.
By the end of the exercise, students will develop two proposals; one proposal will represent a company’s privacy policy regarding their app while the other proposal will represent technical changes that are necessary to comply with privacy policy.

We look forward to the experience and student feedback! Stay tuned!

October 15, 2017: Lisa Federer Traces Hackathon Communication

This past August, Lisa Federer attended the NCBI Genomics Hackathon on August 14-16, 2017 to study scientific hackathons. The hackathon primarily focused on medical informatics, advanced bioinformatics analysis of next generation sequencing data, and metadata. Over the course of three days, students, scholars, and researchers worked to develop software/ pipelines for genomic analyses and medical informatics data.
Lisa tracked their conversations, tools, and work habits throughout the event, and days following the program.

Utilizing R and trace ethnography, Lisa examined different patterns of communication among teams and whether these have an impact on outcomes and outputs of the hackathon. Check out her repo which contains code used to create visual representations of hackathon communication in the form of Slack channels, Github Repos, and Google Docs!

September 18, 2017: MLIS Graduate Jennifer Siegel Joins EViD

The EViD team is excited to introduce its newest member, MLIS Graduate Student Jennifer Siegel. Supporting Donal Heidenblad’s interactive simulation research, Jenny will be working as a Simulation Controller and supervising week-long role-playing sessions. This involves facilitating scripted parts of the role-playing exercise, utilizing creativity to adapt to the participant’s needs and questions during the simulation.

Jenny received her undergraduate in Molecular & Cellular Biology and History of Science & Technology at Johns Hopkins University. Her previous work experience includes non-profit organizations such as the American Occupational Therapy Foundation and the National Alliance on Mental Illness.

September 12, 2017: University of Maryland, Part of a Six-Institution Collaboration, Receives NSF Grant for Groundbreaking Study on Big Data Ethics

From mobile phone apps to website search engines, wearable technology to social platforms, consumer information has become highly trackable and available, resulting in an ethically questionable free-for-all in research and marketing. But consumers aren’t the only ones concerned about how their personal information is being collected and used. The University of Maryland’s College of Information Studies has formed a project team with five other research institutions to explore the ethics of how these data are captured and used.

The four-year project, PERVADE (Pervasive Data Ethics for Computational Research), was awarded a $3 million grant from the National Science Foundation in August 2017. Prior research on ethics of large and pervasive data has hit roadblocks caused by a lack of empirical knowledge. The PERVADE team looks to “reveal ethical practices and norms to guide those who utilize big data and to inform policymaking and regulation,” says Dr. Katie Shilton, Associate Professor in the College of Information Studies at UMD and principal investigator on the grant.

PERVADE brings together a multi-disciplinary team with expertise in computational science, research ethics, data practices, law and policy, health information, social computing, qualitative and quantitative research methods, and data privacy:

Dr. Katie Shilton – College of Information Studies at the University of Maryland College Park

Dr. Jessica Vitak – College of Information Studies at the University of Maryland College Park

Dr. Matthew Bietz – Department of Informatics at the University of California, Irvine

Dr. Casey Fiesler – Department of Information Science, College of Media, Communication and Information at University of Colorado Boulder

Dr. Jacob Metcalf – Data & Society Research Institute

Dr. Arvind Narayanan – Department of Computer Science at Princeton University

Dr. Michael Zimmer – School of Information Studies at the University of Wisconsin-Milwaukee

The project’s research focus will extend across consumers, big data researchers, commercial providers, and regulators, both domestically and internationally, to explore how these diverse stakeholders understand their ethical obligations and choices, and how their decisions impact data system design and use.

Specific issues that the PERVADE team will examine include how people experience the reuse of their personal data; what social factors influence people’s willingness to share their data; how and when consent should be given; and how consumers’ concerns can be shared with data system designers and big data researchers.

“By empowering researchers with information about the norms and risks of big data research, we can make sure that users of any digital platform are only involved in research in ways they don’t find surprising or unfair,” Dr. Shilton says.

The team aims to use project findings to guide best practices for each stakeholder group using decision-support tools, risk measurement methods, public educational materials, and an open dataset of findings by the end of the project in 2021.

June 1, 2017: Paper Accepted to Science, Technology & Human Values

A paper arguing that the work of internet infrastructure design poses specific barriers to developers’ reflection upon values and politics, “Engaging values despite neutrality: challenges and approaches to values reflection during the design of internet infrastructure” has been published in Science, Technology & Human Values.

Read it here: http://journals.sagepub.com/eprint/uIQnDWKdJBDCMvAJVd7g/full