Podcast - Who Owns Your DNA? Lessons Learned from 23andMe
State AG Pulse | CT AG Reacts to Genetic Data Breach
There is nothing more inherently unique and personal to an individual than his or her DNA. Unlike many other types of personal information, a person’s DNA is immutable. It can be the key to unlocking extremely sensitive...more
In the first episode of a "Florida Capital Conversations" new healthcare privacy series, Tallahassee healthcare attorneys Shannon Hartsfield and Eddie Williams discuss the evolving landscape of genetic data privacy, focusing...more
On March 23, 2025, 23andMe, along with its affiliates, filed for voluntary Chapter 11 bankruptcy. The company’s decision to file for bankruptcy follows in the wake of a 2023 data breach affecting close to 7 million customer...more
23andMe’s recent Chapter 11 bankruptcy filing has sparked significant concerns over the privacy and security of genetic data belonging to its 15 million customers. Founded in 2006, 23andMe built its business around...more
23andMe, a pioneer in the DNA testing kit industry, announced that it has filed for Chapter 11 bankruptcy protection and recently asked to select an independent customer data representative regarding any sale of user data....more
Since its 2006 founding, 23andMe’s (the “Company”) service of collecting, analyzing, and reporting customers’ genetic information has raised privacy concerns among many. Worsening those concerns, the Company filed for...more
On March 23, 2025, 23andMe Holding Co. (“23andMe”) filed for bankruptcy in the Eastern District of Missouri, potentially setting in motion the sale of genetic data collected from more than 15 million people. This has led to...more
Genetic testing company 23andMe has filed for Chapter 11 bankruptcy protection, and its CEO has resigned. It is seeking to sell “substantially all of its assets” through a reorganization plan that will have to be approved by...more
The chapter 11 bankruptcy cases of 23andMe Holding Co. and its affiliated debtors (collectively, “23andMe”), the company that provides direct-to-consumer genetic testing and ancestry services, has prompted a wave of panicked...more
Washington’s My Health My Data Act implements strict—and separate—consent requirements for the collection and sharing of an individual’s health data, with few exceptions. As of March 31, 2024 the Washington My Health My...more
On February 13, 2024, Nebraska’s Governor signed Legislative Bill 308, which enacts additional consumer protections for consumers in the state. It is similar to another genetic information law passed by Montana last year. ...more
A data breach that exposed sensitive data collected in genetic testing that could potentially be used to target vulnerable populations has attracted the attention of Connecticut AG William Tong. In Episode 9, Chris Allen and...more
This year has proven to be active in terms of state privacy legislation. In addition to Montana’s Consumer Data Privacy Act, the state has now passed a Genetic Information Privacy Act. Montana defines “genetic data” as any...more
On June 7, 2023, Montana’s Governor signed Senate Bill (SB) 351 which revises the state’s privacy law pertaining to genetic information. This legislation takes effect on October 1, 2023. Covered Entity- Businesses...more
A recent enforcement action by the Federal Trade Commission (“FTC”) against 1Health.io—which sells “DNA Health Test Kits” to consumers for health and ancestry insights—serves as a reminder that the FTC is increasingly...more
The FTC reached a proposed settlement with 1Health.io Inc., also known as Vitagene, Inc., to resolve allegations that the genetic testing firm insufficiently protected consumers’ genetic and health data....more
In the FTC’s first case focused on the privacy and security of genetic information, the FTC alleges that San Francisco-based Vitagene, Inc. – now known as 1Health.io – failed to live up to its promises and unfairly changed...more
Since the privacy and security regulations were issued under the federal Health Insurance Portability and Accountability Act (HIPAA), critics pointed to the limitations on the reach of those rules. A critical limitation...more
Effective January 1, 2022, California Senate Bill 41, the Genetic Information Privacy Act (GIPA), imposes requirements on the collection, use, and disclosure of genetic data collected or derived from direct-to-consumer...more
I have written about genetic testing kits before, but this subject matter is worth repeating. I find that people don’t always understand the consequences when sending a swab to a genetic testing company. Consumer Reports...more
Last month, California Governor Gavin Newsom signed Senate Bill 41, the Genetic Information Privacy Act (“GIPA”), a law that regulates “direct-to-consumer genetic testing companies” that handle the “genetic data” of...more
California Governor Newsom signed the Genetic Information Privacy Act (GIPA) into law on October 6, 2021. GIPA requires direct-to-consumer genetic testing companies to comply with certain privacy and data security...more
When it comes to the privacy of health information, California belongs to the select group of states that have implemented broad consumer privacy protections above and beyond those provided by the federal Health Insurance...more
Utah recently signed into law SB 227, creating the Genetic Information Privacy Act (GIPA). The law, which is anticipated to go into effect in May 2021, is aimed at protecting genetic data collected from direct-to-consumer...more
On September 25, 2020, Governor Gavin Newsom vetoed the California Genetic Information Privacy Act (“GIPA”), about which we reported. Governor Newsom expressed his support for protecting the privacy of individuals’ genetic...more