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Make Data Work
Sept 29–Oct 1, 2015 • New York, NY

Personal information out of context: Building a consumer subject review board

Evan Selinger (Rochester Institute of Technology), Jules Polonetsky (Future of Privacy Forum)
11:20am–12:00pm Wednesday, 09/30/2015
Law, Ethics, & Open Data
Location: 3D 04/09 Level: Non-technical
Average rating: ***..
(3.75, 4 ratings)

In our data-driven economy, new uses of data continuously emerge in a wide variety of contexts. Many of these new uses of personal information are natural extensions of current practices, well within the expectations of consumers and the boundaries of traditional Fair Information Practice Principles. In other cases, data uses may be outside consumer expectations, and traditional mechanisms for providing users with notice and choice unavailable.

In some cases, organizations should not proceed due to heightened risks to the affected individuals or broader ethical concerns. In other cases, new data uses more offer tremendous benefits to individuals, communities, or society at large. An ethical analysis would allow such uses to proceed, but how can organizations — and for-profit ventures in particular — approach ethical questions around data use?

Attendees will learn about recent calls for the creation of consumer subject review boards to evaluate new data uses, which was embraced by the White House in its recent Consumer Privacy Bill of Rights proposal under the title of “Privacy Review Boards.”

They will also learn about some of the existing conceptual and practical challenges to addressing ethics in data use. The speakers will recommend that organizations build upon existing ethical frameworks, namely the seminal Belmont Report on ethical principles for human subject research in the biomedical and behavioral sciences, and the more recent Menlo Report for computer and information security research. Specifically, this presentation proposes:

  • To discuss how the foundational principles of (1) beneficence, (2) justice, and (3) respect for persons can be applied in the context of big data
  • To explain how these principles can be adapted to the fast-paced data economy, where speed and scale is of the utmost importance.

Philosopher Evan Selinger will discuss some of the chief ethical issues around non-contextual uses of personal information, and how these issues are already posing challenges for privacy and other compliance officers within organizations. Joseph Jerome, policy counsel at the Future of Privacy Forum, will discuss how these challenges could be channeled through the creation of formalized review boards. He will offer a possible framework for developing a consumer subject review board, including organizational structure and basic substantive rules, based on existing corporate practices and lessons taken from institutional review boards.

Photo of Evan Selinger

Evan Selinger

Rochester Institute of Technology

Evan Selinger is an associate professor of philosophy at Rochester Institute of Technology, where he is also affiliated with the Center for Media, Arts, Games, Interaction, and Creativity (MAGIC). He’s also a fellow at The Institute for Ethics and Emerging Technology, and serves on the Advisory Board of The Future of Privacy Forum. Evan’s research primarily addresses ethical issues concerning technology, science, the law, expertise, and sustainability.

A prolific academic author, Evan also cares deeply about public engagement, and regularly writes for popular magazines, newspapers, and blogs, including: Wired, The Atlantic, Slate, The Wall Street Journal, The Nation, Salon, CNN, Bloomberg Opinion, Forbes, and Huffington Post.

Photo of Jules Polonetsky

Jules Polonetsky

Future of Privacy Forum

Jules Polonetsky serves as executive director and co-chair of the Future of Privacy Forum, a Washington, D.C.-based think tank that seeks to advance responsible data practices. FPF is supported by the chief privacy officers of more than 110 leading companies, several foundations, as well as by an advisory board comprised of the country’s leading academics and advocates. FPF’s current projects focus on big data, mobile, location, apps, the internet of things, wearables, de-identification, connected cars and student privacy.

His previous roles have included serving as chief privacy officer at AOL and before that at DoubleClick; as consumer affairs commissioner for New York City; as an elected New York State Legislator and as a congressional staffer; and as an attorney.

Jules serves on the Advisory Board of the Center for Copyright Information. He has served on the boards of a number of privacy and consumer protection organizations including TRUSTe, the International Association of Privacy Professionals, and the Network Advertising Initiative. From 2011-2012, Jules served on the Department of Homeland Security Data Privacy and Integrity Advisory Committee.

In 2001, Crain’s NY Business magazine named Jules one of the top technology leaders in New York City. He is a regular speaker at privacy and technology events and has testified or presented before Congressional committees and the Federal Trade Commission.