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 […]
Regu(AI)ting Health: Lessons for Navigating the Complex Code of AI and Healthcare Regulations
Authors: Stephanie Wong, Amber Ezzell, & Felicity Slater As an increasing number of organizations utilize artificial intelligence (“AI”) in their patient-facing services, health organizations are seizing the opportunity to take advantage of the new wave of AI-powered tools. Policymakers, from United States (“U.S.”) government agencies to the White House, have taken heed of this trend, […]
ITPI: New OECD-Israel Workshop January 2021 Report
The Israel Tech Policy Institute (ITPI) is excited to share a new report on key issues emerging from the OECD Workshop: ‘Supporting Health Innovation with Fair Information Practice Principles‘. The OECD Workshop was held virtually from 19 – 20 January 2021, in collaboration with the Israeli Ministry of Health and the Israel Tech Policy Institute. The report was drafted by Limor Shmerling […]
The Significance of Inclusion in Clinical Trials and Medical Research Databases
Our colleagues at the Israel Tech Policy Institute (ITPI) published a thoughtful blog on the significance of diversity and inclusion in clinical trials and health and medical research databases. They discuss the imperative of being represented in data, for one’s existence to be recognized and considered. When such data is the building block for a […]
FPF and Leading Health & Equity Organizations Issue Principles for Privacy & Equity in Digital Contact Tracing Technologies
With support from the Robert Wood Johnson Foundation, FPF engaged leaders within the privacy and equity communities to develop actionable guiding principles and a framework to help bolster the responsible implementation of digital contact tracing technologies (DCTT). Today, seven privacy, civil rights, and health equity organizations signed on to these guiding principles for organizations implementing […]
Research from Stanford Medicine and Empatica, Inc: Early Detection of COVID-19 Using Empatica Smartwatch Data
Tejaswini Mishra, PhD, Michael Snyder, PhD, Erika Mahealani Hunting, Alessandra Celli, Arshdeep Chauhan, and Jessi Wanyi Li from the Stanford University School of Medicine’s Department of Genetics, and Empatica Inc. are the recipients of the second-annual FPF Award for Research Data Stewardship. The collaboration between the research team from Stanford Medicine and Empatica, a medical […]
Google: COVID-19 Community Mobility Reports
Google has been recognized with the second-annual FPF Award for Research Data Stewardship for its work to produce, aggregate, anonymize, and share data on community movement during the COVID-19 pandemic. Google’s Community Mobility Reports go through a robust anonymization process that employs differential privacy techniques to ensure that personal data, including an individual’s location, movement, […]
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 […]
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 […]