FPF Archive

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 […]

FPF and IAF Release “A Taxonomy of Definitions for the Health Data Ecosystem”
The Blog

May 29, 2019 | Carson Martinez

FPF and IAF Release “A Taxonomy of Definitions for the Health Data Ecosystem”

Healthcare technologies are rapidly evolving, producing new data sources, data types, and data uses, which precipitate more rapid and complex data sharing. Novel technologies—such as artificial intelligence tools and new internet of things (IOT) devices and services—are providing benefits to patients, doctors, and researchers. Data-driven products and services are deepening patients’ and consumers’ engagement, and […]

FamilyTreeDNA Agreement with FBI Creates Privacy Risks
The Blog

February 6, 2019 | FPF Staff

FamilyTreeDNA Agreement with FBI Creates Privacy Risks

Company’s Deal with Law Enforcement Surprises Consumers and Is Out-of-Step with Industry Norms and Best Practices  By John Verdi and Carson Martinez Last week, FamilyTreeDNA announced an agreement with the FBI to allow agents to test DNA samples from crime scenes, develop genetic profiles, and identify familial matches. This agreement marks the first time a […]

FPF, EFPIA, and CIPL Workshop Report Now Available: “Can GDPR Work for Health Scientific Research?”
The Blog

January 9, 2019 | Carson Martinez

FPF, EFPIA, and CIPL Workshop Report Now Available: “Can GDPR Work for Health Scientific Research?”

On October 22, 2018, the Future of Privacy Forum (FPF), the European Federation of Pharmaceutical Industries and Associations (EFPIA), and the Centre for Information Policy Leadership (CIPL) hosted a workshop in Brussels, “Can GDPR Work for Health Scientific Research?” to discuss the processing of personal data for scientific research purposes under the European Union’s General Data Protection Regulation (GDPR).