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.
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 […]
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 […]
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 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 […]
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, […]
California SB 980 Would Codify Many of FPF’s Best Practices for Consumer Genetic Testing Services, but Key Differences Remain
Authors: John Verdi (Vice President of Policy) and Katelyn Ringrose (Christopher Wolf Diversity Law Fellow) In July 2018, the Future of Privacy Forum released Privacy Best Practices for Consumer Genetic Testing Services. FPF developed the Best Practices following consultation with technical experts, regulators, leading consumer genetic and personal genomic testing companies, and civil society. The […]
FPF & BrightHive Release Playbook to Create Responsible Contact Tracing Initiatives, Address Privacy & Ethics Concerns
A new playbook from the Future of Privacy Forum (FPF) and BrightHive, Responsible Data Use Playbook for Digital Contact Tracing, provides a series of considerations to assist stakeholders in setting up a digital contact tracing initiative to track and manage the spread of COVID-19, while addressing privacy concerns raised by these technologies in an ethical, […]
Dr. Rachele Hendricks-Sturrup Discusses Trends in Health Data
We’re talking to FPF senior policy experts about their work on important privacy issues. Today, Dr. Rachele Hendricks-Sturrup, Health Policy Counsel, is sharing her perspective on health data and privacy. Dr. Hendricks-Sturrup has more than 12 years of experience in healthcare and biomedical research, health journalism, and engagement with digital health companies and startups. […]
Associated Press: Schools debate whether to detail positive tests for athletes
In a recent article published by the Associated Press in The Washington Post and The New York Times, the Future of Privacy Forum warns of the privacy risks of sharing information about positive COVID-19 tests among students, particularly student athletes who have already returned to campus to prepare for the upcoming sports season. Read an excerpt […]