FPF Archive

FPF Submits Comments Regarding Data Protection & COVID-19 Ahead of National Committee on Vital and Health Statistics Hearing
The Blog

September 10, 2020 | Pollyanna Sanderson

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 […]

California’s SB 980 Would Codify Strong Protections for Genetic Data
The Blog

September 3, 2020 | John Verdi

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
The Blog

July 24, 2020 | Katelyn Ringrose

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 […]

Newly Released COVID-19 Privacy Bills Would Regulate Pandemic-Related Data
The Blog

May 15, 2020 | FPF Staff

Newly Released COVID-19 Privacy Bills Would Regulate Pandemic-Related Data

By Pollyanna Sanderson (Policy Counsel), Stacey Gray (Senior Policy Counsel) & Katelyn Ringrose (Christopher Wolf Diversity Law Fellow) Yesterday afternoon, leading House and Senate Democrats introduced the Public Health Emergency Privacy Act. The Democratic-led bill, which was introduced by Senators Blumenthal and Warner, as well as Representatives Eshoo, Schakowsky and DelBene, follows the May 10th […]

Artificial Intelligence and the COVID-19 Pandemic
The Blog

May 7, 2020 | Dr. Sara Jordan

Artificial Intelligence and the COVID-19 Pandemic

By Brenda Leong and Dr. Sara Jordan Machine learning-based technologies are playing a substantial role in the response to the COVID-19 pandemic. Experts are using machine learning to study the virus, test potential treatments, diagnose individuals, analyze the public health impacts, and more. Below, we describe some of the leading efforts and identify data protection […]

FPF Submits Comments to NIH on the NIH-Wide Strategic Plan for Fiscal Years 2021-2025
The Blog

April 28, 2020 | Marianne Varkiani

FPF Submits Comments to NIH on the NIH-Wide Strategic Plan for Fiscal Years 2021-2025

Earlier this month, the Future of Privacy Forum (FPF) submitted comments to the National Institutes of Health (NIH) on the NIH-Wide Strategic Plan covering fiscal years 2021-2025. In the letter, Health Policy Counsel Rachele Hendricks-Sturrup and Artificial Intelligence Policy Counsel Sara Jordan propose the addition of a cross-cutting theme to NIH’s strategic plan as well […]

FPF and Privacy Analytics Identify “A Practical Path Toward Genetic Privacy”
The Blog

April 23, 2020 | Katelyn Ringrose

FPF and Privacy Analytics Identify “A Practical Path Toward Genetic Privacy”

Paper highlights de-identification standards, re-identification research, and emerging technical, contractual, and policy protections that can safeguard genetic data while supporting research. Genomic data is arguably the most personal of all personally identifiable information (“PII”). Techniques to de-identify genomic data to limit privacy and security risks to individuals–while that data is used for research and statistical […]

A Closer Look at Genetic Data Privacy and Nondiscrimination in 2020
The Blog

March 2, 2020 | Dr. Rachele Hendricks-Sturrup

A Closer Look at Genetic Data Privacy and Nondiscrimination in 2020

Florida lawmakers recently introduced HB 1189/SB 1564 – a bill that would prohibit life and long-term care insurers from basing coverage and rates or denying coverage based on individuals’ genetic information. Washington State lawmakers are considering a bill, HB 2485, that would prohibit life insurance companies and others from obtaining individuals’ genetic information from direct-to-consumer […]

The Blog

October 3, 2019 | Jules Polonetsky

FPF Expands Health Privacy Initiative

FPF is delighted to announce that Dr. Rachele Hendricks-Sturrup has joined the staff as health policy counsel, strengthening FPF’s commitment to supporting the data protection and ethics guidelines needed for health data. In this role, Rachele will work with stakeholders to advance opportunities for data to be used for research and real world evidence, improve patient […]