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.
ITPI: New OECD-Israel Workshop January 2021 Report
The Israel Tech Policy Institute (ITPI) is excited to share a new report on key issues emerging from the OECD Workshop: ‘Supporting Health Innovation with Fair Information Practice Principles‘. The OECD Workshop was held virtually from 19 – 20 January 2021, in collaboration with the Israeli Ministry of Health and the Israel Tech Policy Institute. The report was drafted by Limor Shmerling […]
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 […]
BCI Technical and Policy Recommendations to Mitigate Privacy Risks
This is the final post of a four-part series on Brain-Computer Interfaces (BCIs), providing an overview of the technology, use cases, privacy risks, and proposed recommendations for promoting privacy and mitigating risks associated with BCIs. Click here for FPF and IBM’s full report: Privacy and the Connected Mind. In case you missed them, read the […]
BCI Commercial and Government Use: Gaming, Education, Employment, and More
This post is the third in a four-part series on Brain-Computer Interfaces (BCIs), providing an overview of the technology, use cases, privacy risks, and proposed recommendations for promoting privacy and mitigating risks associated with BCIs. Click here for FPF and IBM’s full report: Privacy and the Connected Mind. In case you missed them, read the […]
BCIs & Data Protection in Healthcare: Data Flows, Risks, and Regulations
This post is the second in a four-part series on Brain-Computer Interfaces (BCIs), providing an overview of the technology, use cases, privacy risks, and proposed recommendations for promoting privacy and mitigating risks associated with BCIs. Click here for FPF and IBM’s full report: Privacy and the Connected Mind. In case you missed it, read the […]
Brain-Computer Interfaces & Data Protection: Understanding the Technology and Data Flows
This post is the first in a four-part series on Brain-Computer Interfaces (BCIs), providing an overview of the technology, use cases, privacy risks, and proposed recommendations for promoting privacy and mitigating risks associated with BCIs. Click here for FPF and IBM’s full report: Privacy and the Connected Mind. Additionally, FPF-curated resources, including policy & regulatory […]
12th Annual Privacy Papers for Policymakers Awardees Explore the Nature of Privacy Rights & Harms
The winners of the 12th annual Future of Privacy (FPF) Privacy Papers for Policymakers Award ask big questions about what should be the foundational elements of data privacy and protection and who will make key decisions about the application of privacy rights. Their scholarship will inform policy discussions around the world about privacy harms, corporate […]
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 […]
FPF in 2021: Delivering Privacy Insights & Expert Analysis
With the last days of 2021 upon us, we wanted to take a moment to reflect on this exciting year that saw FPF expand its presence both domestically and around the globe, while producing engaging events, thought-provoking analysis, and insightful reports with real-world impact. Growing Global Expertise The scope of FPF’s international work continued to […]
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 […]