Healthcare technologies are rapidly evolving, producing new data types and innovative data uses. Data and technology can bring significant enhancements to the healthcare system, deepen patients’ and consumers’ engagement and understanding about their health, and be used as part of initiatives meant to improve health outcomes. It is critical to analyze how sensitive health and wellness data affect individual privacy and understand what it means for doctors, researchers, and companies to responsibly use such data. The FPF health team continues to build on its prior work on Consumer Wearables and Wellness Apps and Devices and Privacy Best Practices for Consumer Genetic Testing Services by exploring and addressing issues at the forefront and intersection of health, data, and privacy. Of main focus are the privacy challenges related to the collection, use, and sharing of both medical data and data that falls outside of the scope of HIPAA and FDA regulations. FPF brings together stakeholders to analyze how new technologies and data practices in the health ecosystem can impact individual privacy and promote the more effective and ethical use of data.
Africa’s Data Protection Reforms: A Continental Perspective on the Drivers of Change in Legal Frameworks
1. Introduction Within an evolving digital landscape, several African jurisdictions have proposed a variety of reforms to existing and novel legal frameworks that regulate the processing of personal data, and the development and deployment of new technologies. Across the continent, there is a growing consensus among legislators on the need to create a regulatory environment […]
FPF in 2023: A Year in Review
As 2023 comes to an end, we want to reflect on a year that saw the Future of Privacy Forum (FPF) continue to expand its presence globally and domestically while organizing engaging events, publishing thought-provoking analysis, providing the latest expert updates, and more. FPF continues to convene industry experts, academics, consumer advocates, and other experts […]
FPF in 2022: A Year in Review
As 2022 comes to an end, we wanted to reflect on a year that saw the Future of Privacy Forum (FPF) expand its presence both domestically and around the globe, while producing engaging events, thought-provoking analysis, and insightful publications. Global Expansion In 2022, FPF closely followed and advised upon significant developments in Asia, the European […]
Acting FTC Chairwoman Slaughter Highlights Priorities in Privacy Papers for Policymakers Event Keynote
The Future of Privacy Forum’s 11th-annual Privacy Papers for Policymakers event – the first event in the series to take place virtually – was a success! This year’s event featured a keynote speech by Acting FTC Chairwoman Rebecca Kelly Slaughter and facilitated discussions between the winning authors – Amy B. Cyphert, Clarisse Girot, Brittan Heller, Tiffany C. […]
FPF Health and AI & Ethics Policy Counsels Present a Scientific Position at ICML 2020 and at 2020 CCSQ World Usability Day
On November 12, 2020, FPF Policy Counsels Drs. Rachele Hendricks-Sturrup and Sara Jordan presented privacy-by-design alongside human-centered design concepts during the 2020 CCSQ World Usability Day virtual conference. This presentation followed Drs. Hendricks-Sturrup’s and Jordan’s July 2020 scientific position paper presented at the International Conference on Machine Learning (ICML) 2020, entitled “Patient- Reported Outcomes: A Privacy-Centric and Federated Approach […]
FPF and LGBT Tech Host Discussion in Honor of Human Rights Day
Yesterday, in honor of International Human Rights Day, a time when individuals and organizations around the world celebrate the 1948 ratification of the Universal Declaration of Human Rights, FPF and LGBT Tech hosted a discussion exploring the “LGBTQ+ Right to Privacy.” The conversation featured tech privacy and policy experts from both FPF and LGBT Tech, including: Christopher Wood, Executive […]
24 Organizations Release Principles for Protecting Student Data Privacy and Equity in the Pandemic
The Future of Privacy Forum (FPF) and 23 other education, healthcare, disability rights, data protection, and civil liberties organizations today released Education During a Pandemic: Principles for Student Data Privacy and Equity (available here). The Principles offer 10 guiding recommendations for schools as they rely on new technologies and data to facilitate remote, in-person, or […]
FPF, Highmark Health, and CMU Host Wired for Health: 2020 — Examining Biometric Technologies in the Age of COVID-19
On Thursday, October 8th, Highmark Health, Carnegie Mellon University’s CyLab Security and Privacy Institute, and Future of Privacy Forum hosted a virtual symposium—taking an in-depth look at the role of biometrics and privacy in the COVID-19 era. During this virtual symposium, expert discussants and presenters examined the impact of biometrics and privacy in the ongoing […]
FPF Testifies at FTC Data Portability Workshop
Yesterday, on September 22, 2020, the Federal Trade Commission held a public workshop, “Data To Go,” examining the benefits and challenges of data portability frameworks for consumers and competition. As a panelist during the first discussion, FPF’s Gabriela Zanfir-Fortuna discussed: how data portability operates in different commercial sectors; lessons learned from the GDPR and other […]
Five Top of Mind Data Protection Recommendations for Brain-Computer Interfaces
By Jeremy Greenberg, [email protected] and Katelyn Ringrose [email protected]. Key FPF-curated background resources – policy & regulatory documents, academic papers, and technical analyses regarding brain-computer interfaces are available here. Recently, Elon Musk livestreamed an update for Neuralink—his startup centered around creating brain-computer interfaces (BCIs). BCIs are an umbrella term for devices that detect, amplify, and translate […]