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.
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 […]
A Look Back at the Role of Law and the Right To Privacy in LGBTQ+ History
By Katelyn Ringrose, Christopher Wolf Diversity Law Fellow at the Future of Privacy Forum, and Christopher Wood, Executive Director of LGBT Tech, with thanks to Connor Colson, FPF Policy Intern. LGBTQ+ rights are, and have always been, linked with privacy. Over the years, privacy-invasive laws, practices, and norms have been used to oppress LGBTQ+ individuals […]
Dr. Lauren Gardner, Creator of Johns Hopkins University’s COVID-19 Dashboard, and UC Berkeley Data Analytics Researcher Dr. Katherine Yelick to Keynote FPF Conference on Privacy & Pandemics
Workshop Explores the Value and Limits of Data and Technology in the Context of the COVID-19 Pandemic Today, the Future of Privacy Forum announced a pair of distinguished professors and researchers will be the keynote speakers for a two-day virtual workshop exploring the value and limits of data and technology in the context of a […]
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 […]
FPF Submits Comments Regarding Data Protection & COVID-19 Ahead of National Committee on Vital and Health Statistics Hearing
Yesterday, FPF submitted comments to the National Committee on Vital and Health Statistics (NCVHS) ahead of a Virtual Hearing of the Subcommittee on Privacy, Confidentiality, and Security on September 14, 2020. The hearing will explore considerations for data collection and use during a public health emergency, in light of the deployment of new technologies for […]
FPF Presents @ RightsCon 2020: “Frontiers in health data privacy: navigating blurred expectations across the patient-consumer spectrum”
The patient-consumer spectrum is a growing concept in which healthcare is rapidly transitioning from a periodic activity in fixed, traditional health care settings to an around-the-clock activity that involves the generation, use, and integration of data reflecting many aspects of individuals’ lives and behaviors. Accompanying this spectrum are blurred distinctions between traditional versus consumer-generated health […]
Call for Position Statements on Responsible Uses of Technology and Health Data During Times of Crisis
Event Overview The Future of Privacy Forum, in collaboration with the National Science Foundation, Duke Sanford School of Public Policy, SFI ADAPT Research Centre, Dublin City University, and Intel Corporation presents Privacy & Pandemics: Responsible Uses of Technology and Health Data During Times of Crisis — An International Tech and Data Conference, including a two day […]
California’s SB 980 Would Codify Strong Protections for Genetic Data
Author: John Verdi (Vice President of Policy) This week, SB 980 (the “Genetic Information Privacy Act”) passed the California State Assembly and State Senate, with near unanimous support (54-10 and 39-0). If signed by the Governor before the Sept. 30 deadline, the law would become the first comprehensive genetic privacy law in the United States, […]