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.
Call for Nominations Open: FPF’s Award for Research Data Stewardship
When companies share data with researchers in a way that protects data, the collaboration can unlock new scientific insights and drive progress in medicine, public health, education, social science, and many other fields. FPF is thrilled to announce the open nomination period for FPF’s 3rd Annual Award for Research Data Stewardship. The Award recognizes partnerships […]
Report Analyzes the Role of Data Protection in Safeguarding Sexual Orientation and Gender Identity Information
While digital technology has empowered LGBTQ+ individuals to find community and access services, the increasing availability and use of connected devices have also created new privacy risks for LGBTQ+ communities. Today, the Future of Privacy Forum (FPF), a global non-profit focused on data privacy and protection, and experts from LGBT Tech — a national, nonpartisan […]
New Report on Limits of “Consent” in South Korea’s Data Protection Law
Today, the Future of Privacy Forum (FPF) and Asian Business Law Institute (ABLI) – as part of their ongoing joint research project: “From Consent-Centric Data Protection Frameworks to Responsible Data Practices and Privacy Accountability in Asia Pacific” – are publishing a second report in their series of detailed jurisdiction reports on the status of “consent” […]
Measuring Privacy Programs
The risks of falling short on privacy compliance are greater than they have ever been. New laws are going into effect around the world and in the states, enforcement agencies are exercising their authority and media organizations have teams devoted to identifying data protection failures. Legal judgments can run into the billions. And most important, […]
The Significance of Inclusion in Clinical Trials and Medical Research Databases
Our colleagues at the Israel Tech Policy Institute (ITPI) published a thoughtful blog on the significance of diversity and inclusion in clinical trials and health and medical research databases. They discuss the imperative of being represented in data, for one’s existence to be recognized and considered. When such data is the building block for a […]
Brussels Privacy Symposium 2021 Report
On November 16, 2021, the Future of Privacy Forum (FPF) and the Brussels Privacy Hub of Vrije Universiteit Brussel (VUB) hosted the Brussels Privacy Symposium 2021 – The Age of AI Regulation: Global Strategic Directions. The event, convened by Jules Polonetsky, CEO of FPF, Christopher Kuner and Gianclaudio Malgieri, Co-Chairs of the Brussels Privacy Hub […]
New FPF Report: Demystifying Data Localization in China – A Practical Guide
On February 21, 2022, FPF published a report detailing China’s data governance framework for data localization and cross-border transfers. The report outlines 10 steps organizations can take before deciding to localize or transfer data, with practical advice on how to carry out each of them. By examining provisions of relevant laws and administrative regulations passed […]
Overcoming Hurdles to Effective Data Sharing for Researchers
In 2021, challenges faced by academics in accessing corporate data sets for research and the issues that companies were experiencing to make privacy-respecting research data available broke into the news. With its long history of research data sharing, FPF saw an opportunity to bring together leaders from the corporate, research, and policy communities for a conversation […]
Organizations must lead with privacy and ethics when researching and implementing neurotechnology: FPF and IBM Live event and report release
A New FPF and IBM Report and Live Event Explores Questions About Transparency, Consent, Security, and Accuracy of Data The Future of Privacy Forum (FPF) and the IBM Policy Lab released recommendations for promoting privacy and mitigating risks associated with neurotechnology, specifically with brain-computer interface (BCI). The new report provides developers and policymakers with actionable […]
Data Sharing … By Any Other Name
There are many different uses of the term “data sharing” to describe a relationship between parties who share data from one organization to another organization for a new purpose. Some uses of the term data sharing are related to academic and scientific research purposes, and some are related to transfer of data for commercial or government purposes. ..it is imperative that we are more precise which forms of sharing we are referencing so that the interests of the parties are adequately considered, and the various risks and benefits are appropriately contextualized and managed.