Research often requires using sensitive data to answer important questions. The ethical collection and analysis of personal information can be challenging to do while still protecting the privacy of the implicated individuals, honoring informed consent, and complying with other legal obligations. The technology, policies, and ethical considerations for researchers are constantly shifting, sometimes making it difficult to keep up. That’s why FPF engages stakeholders across academia and industry to produce recommendations, best practices, and ethical review structures that promote responsible research. Our work is centered around streamlining, encouraging, and promoting responsible research that respects essential privacy and ethical considerations throughout the research lifecycle. FPF works with policymakers to develop legislative protections that support effective, responsible research with strong privacy safeguards, including hosting events that allow policymakers and regulators to engage directly with practitioners from academia, advocacy, and industry.
FPF also has an Ethics and Data in Research Working Group. This group receives late-breaking analysis of emerging legislation affecting research and data, meets to discuss the ethical and technological challenges of conducting research, and collaborates to create best practices to protect privacy, decrease risk, and increase data sharing for research, partnerships, and infrastructure. Learn more and join here.
June 14th Event: A Roundtable on Ethics, Privacy, and Research Reviews
Please join the Future of Privacy Forum (FPF) and the Ohio State University’s Program on Data and Governance in Washington, DC, on Tuesday, June 14, 2016, for a discussion of ethics, privacy and practical research reviews in corporate settings.
Scientists Are Just as Confused About the Ethics of Big-Data Research as You
“The IRB may make very different decisions based on who is on the board, what university it is, and what they’re feeling that day,” says Kelsey Finch, policy counsel at the Future of Privacy Forum. There are hundreds of these IRBs in the US—and they’re grappling with research ethics in the digital age largely on their own.
White House Releases Report on Big Data and Discrimination
FPF has been an early and eager participant in this discussion and was pleased to see the report’s appreciation for the potential of Big Data. In dealing with the risks of discrimination posed by realization of Big Data’s potential, FPF sees strong data ethics framework as a necessary and effective addition to the raw potential of technology.
FPF Welcomes New Senior Fellow – Ira Rubinstein
FPF is proud to welcome its newest Senior Fellow, Ira Rubinstein. Ira will be working with FPF staff, fellows and members on a number of cross-Atlantic privacy issues and will be collaborating with EU academics and institutions on projects focused on de-identification, ethics, big data, and other issues. Ira Rubinstein is a Senior Fellow at […]
Algorithmic transparency: Examining from within and without
As the volume of consumer data grows, an increasing number of decisions previously made by humans are now made by algorithms. Many thought leaders have called for algorithmic transparency to ensure that these decisions aren’t leading to unfair or discriminatory outcomes, but algorithmic transparency is tricky to implement. Last December, FTC Commissioner Julie Brill acknowledged […]
Beyond IRBs: Designing Ethical Review Processes for Big Data Research
Kicking off a great event this morning, Beyond IRBs: Designing Ethical Review Processes for Big Data Research, with over 60 of the country’s top academics and industry researchers. Thoughtful Key Note remarks from Professor Ryan Calo, from the University of Washington School of Law, have framed the conversation today around how best to create incentives in […]
Controlling the Future of Privacy
Last week, I was fortunate enough to see several cool new applications of location technology and social data at two conferences which bookended my week. Privacy issues were addressed at the end of each conference, which I understand: a lecture about privacy is the last thing entrepreneurs and researchers want to hear. Unfortunately, privacy can […]
A Way Forward for Social Media Research
Few would deny that technology and social media are changing the way we interact. People today can stay in touch with friends on Facebook, share vacation photos on Instagram, follow trends on Twitter, grow their networks on LinkedIn, and explore communities on Reddit. And people are staying connected wherever they go. The Pew Research Center […]
Call for Papers: Beyond IRBs
CALL FOR PAPERS Beyond IRBs: Designing Ethical Review Processes for Big Data Research In the age of Big Data, innovative uses of information are continuously emerging in a wide variety of contexts. Increasingly, researchers at companies, not-for-profit organizations and academic institutions use individuals’ personal data as raw material for analysis and research. For research […]
Beyond IRBs: Designing Ethical Review Processes for Big Data
On December 10th, the Future of Privacy Forum will be hosting a full-day workshop on how to develop ethical review frameworks for big data research, featuring lessons from both existing academic institutional review boards and the privacy profession.