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.
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 […]
Five Big Questions (and Zero Predictions) for the U.S. State Privacy Landscape in 2025
In the enduring absence of a comprehensive national framework governing the collection, use, and transfer of personal data, state-level activity on privacy legislation has been on a consistent upward trend since the enactment of the California Consumer Privacy Act in 2018. With all 50 U.S. states scheduled to be in session in 2025, stakeholders are […]
FPF Unveils Report on the Anatomy of State Comprehensive Privacy Law
Today, the Future of Privacy Forum (FPF) launched a new report—Anatomy of State Comprehensive Privacy Law: Surveying the State Privacy Law Landscape and Recent Legislative Trends. By distilling this broad landscape to identify the “anatomy” of state comprehensive privacy law, this report highlights the strong commonalities and the nuanced differences between the various laws, showing […]
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 […]
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 […]
Peak Privacy: Vermont’s Summit on Data Privacy
On June 13, 2024, Governor Phil Scott vetoed H. 121. This marked the first governor veto of a comprehensive privacy bill passed by the state legislature. Immediately prior to the close of the state legislative session on May 10, 2024, the Vermont legislature passed H. 121, “An act relating to enhancing consumer privacy and the […]
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 […]