Consent in the Time of Data Mining
Ahead of our upcoming event, IxDA Seattle invites selected community members to write blog posts addressing the content to be covered at that event.
A salient concern in the design community of late has been what roles and responsibilities we have, as designers, in ensuring the ethicality of our design output. That encompasses not only what we produce, but also how we produce it. Research is a crucial component of the design process, so it is worth examining how research is conducted. Critically, what is consent? How does consent shape human-centered design, the resulting technology, and the data collected from the users who adopt said technology? – Eds.
It can feel like the entire notion of consent rings hollow after the recent news of our online data being used to manipulate public opinion and possibly influence the political direction of nations. But such crises of public trust are not new. People and their “data” have been exploited in the name of progress since the era of Enlightenment, if not before. During the mid-twentieth century, this exploitation reached a point that demanded state intervention. Research was conducted on prisoners of war during World War II, medical trials infected unwitting individuals with syphilis and radiation to study the effects on the human body, and numerous other harmful experiments necessitated a standardized duty of care. The U.S. Congress passed the National Research Act of 1974, which mandated the Institutional Review Board (IRB) to ensure human-subjects research meets specific ethical standards. “Voluntary informed consent” is at the heart of these standards. This means that participants must understand and voluntarily consent to what data is being collected, what it will be used for, and how their data will be anonymized.
Epidemiological research may seem far afield from mining users’ online data. Both, however, are capable of harming individual and communal well-being. Currently, existing data and other publicly available materials do not fall within an IRB’s purview, nor does private industry. Companies use privacy consent forms and NDAs to protect themselves against liability, rather than the informed consent required of federally funded research. Yet after being psychologically and politically profiled on a mass scale, many citizens feel that even these scant social contracts have been violated.
The stakes of consent are high for us in the interaction design community. Our process—creative, technical, or otherwise—is "human-centered." So how do we square our human-centered ethos with the current crisis of public trust? This panel brings together academic and industry practitioners to discuss cross-disciplinary and domain-specific approaches to ethically-based human subjects research and design. The aim of this discussion is to encourage cross-fertilization of ideas regarding the duty of care we have to those we design for.
Join us at Ethical Research for Human-centered Design as explore these topics together.
Moderated by Amanda Snellinger, Ph.D., a User Research Specialist for Aditi-Harman at Microsoft and the Marketing Director for IxDA Seattle. Before entering the tech industry, she was a research fellow at the University of Oxford and taught at Oxford, University of Washington, and Seattle University. She received her Ph.D. in anthropology from Cornell University. She's authored numerous publications on activism, democratic politics, and South Asia, including her recently published book, Making New Nepal: From Student Activism to Mainstream Politics.
Sheetal Agarwal, Ph.D. is a Sr. Design Researcher for WDG Research & Insight at Microsoft where she previously led the Windows for Everyone research agenda and currently acts as Research Communication lead. Prior to her work at Microsoft she ran a successful strategy consulting business, supporting non-profits, government, and businesses in developing communication and technology strategy. Sheetal earned her Ph.D. at the University of Washington and her Masters from Georgetown’s Communication, Culture, and Technology programs, focusing her research on the role of communication and technology in political contexts. She also worked as an award-winning investigative journalist working for the International Consortium of Investigative Journalists in DC. She lives in Seattle with her husband and son, enjoying all that the PNW offers.
Michelle Bayles-Simon, Ph.D. is head of user research for Kindle and eReading. She is responsible for a breadth of experiences that span purchasing, in-book experience, the reader device, higher education, author tools, and publishing. Prior to joining Amazon, she established and ran the user research program for the Financial Services division of Capital One in Dallas, Texas. Michelle also taught Design Research Methods at the University of Texas at Dallas. She has a Ph.D. in Human Factors Psychology with a specialization in Human-Computer Interaction. She earned her BA in Psychology and Interpersonal Communications, from the State University of New York at Oswego.
Brittany Fiore-Gartland, Ph.D. is a Data Science Ethnographer and currently working as a Senior Data Scientist - Product Design at a machine learning startup called AstrumU. Her previous roles were Director of Data Science Ethnography for the eScience Institute at the University of Washington and Senior Research Scientist in the Human Centered Design and Engineering Department. At UW she researched data science teams and the ethical and sociocultural implications of data-intensive technologies. In her current role in industry, she bridges product research, design, and data science and brings an ethical and human-centered approach to product development.
Neena Makhija is a Compliance Analyst at the University of Washington’s Human Subjects Division.Her participation in community-based research projects and interest in accountability to research participants led to a desire to work in her current position. She provides researchers with guidance on regulatory requirements, consent processes, and submitting applications for review. Her previous experiences in providing culturally relevant educational programs and social services to immigrant communities continue to influence her work. She values highlighting the flexibility within federal regulations so more researchers are aware of ways they may utilize engagement and data collection methods tailored for diverse participants. She holds a Masters in Social Work and Public Administration and a Bachelor’s degree in Socio-Cultural Anthropology.
Elizabeth Sanocki, Ph.D. is a Senior Lecturer in the Department of Human Centered Design & Engineering (HCDE) at the University of Washington, and director the HCDE MS & User-Centered Design Certificate program. Most recently working as a Senior User Experience Designer at Amazon, doing UX design for Amazon Web Services (web-based cloud computing applications), Sanocki has over 20 years of experience working in Information Architecture and User Experience (UX) Design and Research. Sanocki received her Ph.D. in Physiological Psychology from the University of Washington, where her dissertation was on human color perception. She holds dual Bachelor's degrees in Psychology and Packaging from Michigan State University.