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.
Data Sharing for Research Tracker
Co-authored by Hannah Babinski, former FPF Intern In celebration of International Open Data Day, FPF is proud to launch the Data Sharing For Research Tracker, a growing list of organizations that make data available for researchers. It provides information about the company, the data, any access restrictions, and relevant links: One of the most difficult, […]
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 […]
FPF’s Year in Review 2024
With contributions from Judy Wang, Communications Intern 2024 was a landmark year for the Future of Privacy Forum, as we continued to grow our privacy leadership through research and analysis, domestic and global meetings, expert testimony, and more – all while commemorating our 15th anniversary. Expanding our AI Footprint While 2023 was the year of […]
Out, Not Outed: Privacy for Sexual Health, Orientations, and Gender Identities
Co-authored by: Judy Wang (FPF Intern), Jeter Sison (FPF Intern), Jordan Wrigley (FPF Data and Policy Analyst, Health & Wellness) On National Coming Out Day, it’s important to recognize that Coming Out is a right of passage for many LGBTQ+ individuals and a decision that they should be empowered to make for themselves. Protections for […]
FPF Analysis of New Requirements for Generative AI Use by Healthcare Entities in Patient Communications
Co-Authored by Judy Wang, FPF Communications Intern On September 28, Governor Gavin Newsom signed California AB 3030, among a host of AI bills. CA AB 3030 amended the California Health & Safety Code and requires specified healthcare entities to disclose the use of generative artificial intelligence (AI) in provider-patient communications through visual or verbal disclaimers […]
Consumer Health Data Privacy Notices by the Numbers
Today, FPF is releasing an infographic that provides insights into how organizations are responding to the transparency requirements of recently enacted U.S. state health privacy laws. The infographic reflects a survey of privacy notices on the websites of 180+ companies across a variety of industries and sectors, from pharmaceutical to apparel. Two key laws enacted […]
AI Forward: FPF’s Annual DC Privacy Forum Explores Intersection of Privacy and AI
The Future of Privacy Forum (FPF) hosted its inaugural DC Privacy Forum: AI Forward on Wednesday, June 5th. Industry experts, policymakers, civil society, and academics explored the intersection of data, privacy, and AI. In Washington, DC’s southwest Waterfront at the InterContinental, participants joined in person for a full-day program consisting of keynote panels, AI talks, […]
Top Six Major Privacy Enforcement Trends: A U.S. Legislation Retrospective
Enforcement activity intensifies as U.S. consumer privacy laws continue to evolve and come into effect. In 2023 and 2024 alone, there have been dozens of enforcement actions at the U.S. federal and state levels, some of which reveal or touch on significant throughlines for privacy policy issues, such as what constitutes a privacy violation or […]
Reproductive Rights Have Been Privacy Rights For 50 Years
About fifty years ago, the U.S. Supreme Court decided a case that would provide the basis for federal privacy protections for reproductive health decisions. The importance of protecting reproductive information and choice, particularly where abortion was concerned, was the basis for Roe v. Wade (1973) and Planned Parenthood v. Casey (1992), which provided women and […]
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 […]