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 […]
(Health) Data is What (Health) Data Does in Nevada
Note: This title is inspired by Professor Daniel J. Solove’s recent essay, ‘Data Is What Data Does: Regulating Based on Harm and Risk Instead of Sensitive Data.’ On June 16, 2023, Nevada Senate Bill 370 (SB 370) was signed into law by Governor Lombardo, making Nevada the second state, after Washington, to pass broad-based consumer […]
Connecticut Shows You Can Have It All
On June 3rd, Connecticut Senate Bill 3 (SB 3), an “Act Concerning Online Privacy, Data and Safety Protections,” cleared the state legislature following unanimous votes in the House and Senate. If enacted by Governor Lamont, SB 3 will amend the Connecticut Data Privacy Act (CTDPA) to create new rights and protections for consumer health data […]
A New Paradigm for Consumer Health Data Privacy in Washington State
The Washington ‘My Health, My Data’ Act (MHMD or the Act) establishes a fundamentally new legal framework within U.S. law to regulate the collection, use, and transfer of consumer health data. Signed into law by Governor Inslee on April 27, MHMD was introduced by request of the Washington Attorney General in response to the Supreme […]
Five Big Questions (and Zero Predictions) for the U.S. State Privacy Landscape in 2023
Entering 2023, the United States remains one of the only global economic powers that lacks a comprehensive, national framework governing the collection and use of consumer data throughout the economy. Congress made unprecedented progress toward enacting baseline privacy legislation in 2022. However, the apparent impasse in the efforts to move H.R. 8152, the American Data […]
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 […]
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 […]