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.
FPF Honors UC-Irvine/Lumos Labs Partnership with First-Ever Award for Research Data Stewardship
Click here to view the Call for Nominations for the 2021 FPF Award for Research Data Stewardship. Click here to watch a recording of the 2020 FPF Award for Research Data Stewardship virtual awards event. University of California Irvine (UCI) Professor of Cognitive Science Mark Steyvers and Lumos Labs – the parent company behind Lumosity, […]
Privacy and Pandemics: A Thoughtful Discussion
As the COVID-19 virus spreads, governments, researchers, and healthcare institutions are seeking to obtain and deploy consumer data to track the spread of the virus, deliver emergency supplies, target travel restrictions and quarantines, and develop vaccines and cures. But can data collected from phones, credit cards, and other sources be used in this emergency without […]
Call for Public Comments: Resources for Companies Sharing Personal Data with Academic Researchers
In June 2019, FPF launched the Corporate-Academic Data Stewardship Research Alliance, a peer-to-peer network of private companies that share the goal of facilitating privacy-protective data sharing between businesses and academic researchers. The Alliance has worked to support data sharing efforts, help address and mitigate challenges that create barriers to sharing, and promote responsible and privacy-protective […]
FPF to Present First-Ever Research Data Stewardship Award
FPF is requesting nominations for its Award for Research Data Stewardship.
Comparing Privacy Laws: GDPR v. CCPA
In November 2018, OneTrust DataGuidance and FPF partnered to publish a guide to the key differences between the General Data Protection Regulation (GDPR) and the California Consumer Privacy Act of 2018 (CCPA). Since then, a series of bills, signed by the California Governor on 11 October 2019, amended the CCPA to exempt from its application […]
FPF Receives Grant To Design Ethical Review Process for Research Access to Corporate Data
Future of Privacy Forum (FPF) has received a grant to create an independent party of experts for an ethical review process that can provide trusted vetting of corporate-academic research projects. FPF will establish a pool of respected reviewers to operate as a standalone, on-demand review board to evaluate research uses of personal data and create a set of transparent policies and processes to be applied to such reviews.
New FPF Study: More Than 200 European Companies are Participating in Key EU-US Data Transfer Mechanism
Co-Authored by: Daniel Neally & Jeremy Greenberg EU Companies’ Participation in Privacy Shield Grew by More than One-Third Over the Past Year EU-US Privacy Shield Essential to Leading European Companies From Major Employers such as Aldi and Dr. Oetker to Leading Technology Firms like CRISPR Therapeutics and Workwave, European Companies Depend on the EU-US Agreement […]
Digital Deep Fakes
The media has recently labeled manipulated videos of people “deepfakes,” a portmanteau of “deep learning” and “fake,” on the assumption that AI-based software is behind them all. But the technology behind video manipulation is not all based on deep learning (or any form of AI), and what are lumped together as deepfakes actually differ depending on the particular technology used. So while the example videos above were all doctored in some way, they were not all altered using the same technological tools, and the risks they pose – particularly as to being identifiable as fake – may vary.
FPF Letter to NY State Legislature
On Friday, June 14, FPF submitted a letter to the New York State Assembly and Senate supporting a well-crafted moratorium on facial recognition systems for security uses in public schools.
Ethical and Privacy Protective Academic Research and Corporate Data
Is edtech helping or hindering student education? What effect does social media have on elections? What types of user interfaces help users manage privacy settings? Can the data collected by wearables inform health care? In almost every area of science, academic researchers are seeking access to personal data held by companies to advance their work. […]