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 […]
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 […]
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
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, […]