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.
Acting FTC Chairwoman Slaughter Highlights Priorities in Privacy Papers for Policymakers Event Keynote
The Future of Privacy Forum’s 11th-annual Privacy Papers for Policymakers event – the first event in the series to take place virtually – was a success! This year’s event featured a keynote speech by Acting FTC Chairwoman Rebecca Kelly Slaughter and facilitated discussions between the winning authors – Amy B. Cyphert, Clarisse Girot, Brittan Heller, Tiffany C. […]
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 […]
Workshop Report: Privacy & Pandemics – Responsible Use of Data During Times of Crisis
In October 2020, the Future of Privacy Forum (FPF) convened a virtual workshop entitled “Privacy and Pandemics: Responsible Uses of Technology and Health Data During Times of Crisis” with invited computer science, privacy law, public policy, social science, and health information experts from around the world to examine benefits, risks, and strategies for the collection […]
FPF and LGBT Tech Host Discussion in Honor of Human Rights Day
Yesterday, in honor of International Human Rights Day, a time when individuals and organizations around the world celebrate the 1948 ratification of the Universal Declaration of Human Rights, FPF and LGBT Tech hosted a discussion exploring the “LGBTQ+ Right to Privacy.” The conversation featured tech privacy and policy experts from both FPF and LGBT Tech, including: Christopher Wood, Executive […]
2020 Brussels Privacy Symposium
The 2020 Brussels Privacy Symposium is the fourth-annual academic program jointly presented by the Brussels Privacy Hub of Vrije Universiteit Brussel (VUB) and the Future of Privacy Forum (FPF) and is a global convening of practical, applicable, substantive privacy research and scholarship. On December 2, 2020, the fourth iteration of the Brussels Privacy Symposium, “Research and the Protection of […]
California’s Prop 24, the “California Privacy Rights Act,” Passed. What’s Next?
Authors: Stacey Gray, Senior Counsel, Katelyn Ringrose, Christopher Wolf Diversity Law Fellow at FPF, Polly Sanderson, Policy Counsel, and Veronica Alix, FPF Legal Intern Despite a day of election uncertainty, November 3, 2020 produced an important moment for privacy legislation: California voters approved Proposition 24 (the California Privacy Rights Act) (CPRA) (full text here). Garnering 56.1% of the vote so far, […]
21st Century Cures Act Final Rule: Key Health Data Privacy Considerations
On the eve of a key compliance date, the HHS Office of the National Coordinator for Health Information Technology (ONC) extended deadlines for entities working in health information technology to comply with a new federal rule intended to “promote health care choice and competition across the United States” and “advance interoperability and support the access, exchange, and […]
Exploring Consumer Attitudes About Privacy
We’ve been taking a look at recent studies about consumer attitudes regarding data use and privacy. A new study, “Privacy Front and Center,” from Consumer Reports’ Digital Lab with support from Omidyar Network, found that American consumers are increasingly concerned about privacy and data security when purchasing new products and services, which may be a competitive advantage […]
FPF Best Practices and Contract Guidelines Help Companies Share Data with Academic Researchers
Does your company have data that could help academic researchers unravel the mysteries of human health, behavior, education, or other areas of study? Data held by private organizations has the potential to lead to scientific insights that can benefit society and improve lives – if it can be accessed in a responsible manner that respects […]