ALS Association helped lead a coalition of patient advocates in securing groundbreaking protections for Californians living with ALS and other genetic conditions

ARLINGTON, Va., Oct. 1, 2026 /PRNewswire/ — In a significant victory for people living with ALS and their families, Governor Gavin Newsom signed AB 1798, the Safeguarding Genetic Information Act, establishing California as a national leader setting a model for genetic privacy protection. The consumer protections established by AB 1798 will take effect on January 1, 2027.

For people and families living with ALS, the law means they can still use genetic information to guide their medical care without worrying it will lead to discrimination against them. The ALS Association was a leading advocate for AB 1798, working alongside Assemblymember Lori Wilson, California Insurance Commissioner Ricardo Lara, people living with ALS, and a broad coalition of patient and consumer organizations to advance the legislation through the California Legislature and to the Governor’s desk, despite fierce opposition from the life insurance industry.

“No one should have to choose between their physical health and their financial future,” said Assemblywoman Lori D. Wilson. “If we agree that people should not pay more or be denied coverage because of who they are, then we should also agree they should not be penalized for what’s written in their DNA. I am incredibly proud to see AB 1798, which protects access to life and non-health disability insurance by banning the use of genetic testing for underwriting purposes and adds privacy protections around sensitive personal information, to the finish line.”

Genetic testing plays a critical role in diagnosis, treatment, clinical trials, research, and personal medical decision-making — and now, Californians can utilize it with confidence. As testing has become more common, so too have concerns about misuse of results, with some patients avoiding testing altogether out of fear of discrimination. AB 1798 changes that story.

“For too long, people have faced an impossible choice: get the genetic information that could help them understand their disease and make informed decisions about their health or worry about what that information could mean for their financial future,” said Melanie Lendnal, J.D., Executive Vice President and Chief of Advocacy for the ALS Association. “With AB 1798 becoming law in California, that equation is changing. This is what effective advocacy looks like: bringing patients to the table, building unlikely coalitions, doing the hard policy work, and staying at it when the opposition is powerful. We are proud to have helped lead this effort, and we are not done. We hope California’s action will inspire policymakers across the country to ensure that genetic information can be used to improve lives, not limit opportunities.”

AB 1798 marks an important milestone in the Association’s broader effort to ensure that advances in genetic medicine benefit patients without creating new barriers to care, research, or personal decision-making.

About the ALS Association
The ALS Association is the largest ALS organization in the world. The ALS Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association is working to make ALS a livable disease while urgently searching for new treatments and a cure. For more information about the ALS Association, visit our website at www.als.org. 

About ALS
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over the course of the disease, people lose the ability to move, to speak, and eventually, to breathe. The disease is always fatal, usually within five years of diagnosis. Few treatment options exist, resulting in a high unmet need for new therapies to address functional deficits and disease progression.

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SOURCE The ALS Association