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.
Mandating “Evidence-Based” Suicide Detection in Chatbots
Co-authored by Sarah Hanson, FPF Health & Wellness Intern This article discusses suicidal ideation, which may be distressing for some readers. (If you or someone you know is struggling, help is available. You can call or text the Suicide & Crisis Lifeline at 988 or visit 988 Lifeline for free, confidential, 24/7 support.) As many […]
No Silver Bullet, But a Silver Lining? PETs and International Data Transfers
Is there a role for Privacy Enhancing Technologies (PETs) to play in the context of international data transfers? The answer to this question could be one of the keys to unlock trusted cross-border data flows at scale in the age of AI. This was the topic explored in a session organized by the Future of […]
Innovation and Data Privacy Are Not Natural Enemies: Insights from Korea’s Experience
The following is a guest post to the FPF blog authored by Dr. Haksoo Ko, Professor at Seoul National University School of Law, FPF Senior Fellow and former Chairperson of South Korea’s Personal Information Protection Commission. The guest post reflects the opinion of the author only and does not necessarily reflect the position or views […]
Chile’s New Data Protection Law: Context, Overview, and Key Takeaways
On August 26, 2024, the Chilean Congress approved Law 21.719, on the Protection of Personal Data (“LPPD”) after eight years of legislative debate. The legislation was published on December 13, 2024, and will become fully effective twenty-four months after that date (in December 2026). The LPPD was introduced in the Senate in 2017 to replace […]
Twelve Privacy Investments for Your Company for a Stronger 2025
FPF has put together a list of Twelve Privacy Investments for Your Company for a Stronger 2025 that reflects on new perspectives on the work that privacy teams do at their organizations. We hope there is something here that’s useful where you work, and we’d love to hear other ideas and feedback. Privacy Investments for Your […]
The Old Line State Does Something New on Privacy
On April 6, the Maryland Senate concurred with House amendments to SB 541, the Maryland Online Data Privacy Act (MODPA), sending the bill to Governor Moore for signature. If enacted, MODPA could be a paradigm-shifting addition to the state privacy law landscape. While recent state comprehensive privacy laws generally have added to the existing landscape […]
The DNA of Genetic Privacy Legislation: Montana, Tennessee, Texas, and Virginia Enter 2024 with New Genetic Privacy Laws Incorporating FPF’s Best Practices
In 2023, four states enacted new genetic privacy laws regulating direct-to-consumer genetic testing companies. This blog post provides details on what these new laws cover and how they compare to FPF’s widely-adopted Best Practices for Consumer Genetic Testing Services. Genetic privacy has been under increasing scrutiny at the state and federal levels, and regulators are […]
Optum & The Mayo Clinic Win the 2022 Award for Research Data Stewardship
Author: Randy Cantz, U.S. Policy Intern, Ethics and Data in Research and former Communications Intern at FPF On Wednesday, May 10, 2023, the Future of Privacy Forum (FPF) honored representatives from Optum and the Mayo Clinic for their outstanding corporate-academic research data-sharing partnership at the 3rd annual Awards for Research Data Stewardship. The awards honor […]
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 […]
FPF Files Comments on CPRA Initial Rulemaking
Yesterday, the Future of Privacy Forum filed comments with the California Privacy Protection Agency on the initial rulemaking under the California Privacy Rights Act (CPRA). The CPRA, which comes into effect in 2023, provides protections for sensitive personal information, expands the California Consumer Privacy Act’s opt-out rights, and requires businesses to provide mechanisms for individuals […]