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.
“Personality vs. Personalization” in AI Systems: Intersection with Evolving U.S. Law (Part 3)
This post is the third in a series on personality versus personality in AI systems. Read Part 1 (exploring concepts) and Part 2 (concrete uses and risks). Conversational AI technologies are hyper-personalizing. Across sectors, companies are focused on offering personalized experiences that are tailored to users’ preferences, behaviors, and virtual and physical environments. These […]
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 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 […]
Event Report: From “Consent-Centric” Frameworks to Responsible Data Practices and Privacy Accountability in Asia Pacific
On September 16, the Asia-Pacific office of the Future of Privacy Forum (FPF) held its first event following its launch in August 2021. This event was hosted by the Personal Data Protection Commission (PDPC) of Singapore during the very popular “Personal Data Protection week” (PDP Week 2021). The theme of the event was Exploring trends: […]
Supporting Responsible Research and Data Protection
Scientific research is often dependent on access to personal information, whether collected directly from individuals or collected for a real-world use and then accessed for research. For research to be trusted, processing of personal information must be lawful, ethical and subject to privacy and security protections. Supporting responsible research is a priority for FPF: Data […]
FPF in 2020: Adjusting to the Unexpected
With 2020 fast coming to a close, we wanted to take a moment to reflect on a year that forced us to re-focus our priorities, along with much of our lives, while continuing to produce engaging events, thought-provoking analysis, and insightful reports. Considering Privacy & Ethics at the Dawn of a New Decade Early in […]
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 […]
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 […]
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 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 […]