The Fragile X Carrier Act

Fragile X is the most common inherited cause of autism — and most families have never heard its name.

We're working to change that in California. The Fragile X Carrier Act is our push to make sure every woman can learn her own Fragile X carrier status before she's pregnant — for her own health, for the health of any children she chooses to have, and on her own terms. It has nothing to do with prenatal testing.

Why we're doing this

Our son Shawn has Fragile X. It runs through families — quietly. When a mom learns the name, she isn't just learning about her child's autism: it's inherited, so it can touch her own health, her sisters, her mother, and the children not yet born. Every mom raising an autistic child deserves to know the name. No child should just be called "autistic" when the real name was Fragile X.

What the Carrier Act does

Proposed draft for the California Legislature's 2027–28 session — Draft v5.3, now in clinical and legislative review. It does not cover prenatal testing of any kind.

• Her right to know — before pregnancy. The bill puts it in the law: every eligible patient has the right to be informed about Fragile X carrier testing and what carrier status means for her own health and for any children she may have.
• Know the name first. At her first well-woman visit at 18 or older, she gets a one-page notice from the Department of Public Health: what a Fragile X carrier is, why it matters for her own health and for any children she may have, and that she has the right to ask for the questionnaire or the test at any time. It educates; it doesn't prescribe — the same model as California's breast-density notice.
• A few questions, once. At her first preconception visit — or the first time she tells any doctor she's planning or considering a pregnancy — she's offered a brief, voluntary personal and family-history questionnaire. She can ask for it anytime. A few questions, no needles.
• Questions lead to a test. If her history flags risk, her doctor must offer a voluntary FMR1 carrier test — on her, never on a pregnancy — with informed consent and genetic counseling. And she can ask for the test regardless.
• Her health, and her future children's. An FMR1 premutation can affect a woman's own health — early menopause (FXPOI), anxiety, depression, and insomnia (FXAND), and for some carriers FXTAS later in life — not just the children she may choose to have. Many of those conditions are treatable once you know. About 1 in 150 women carries one, and most have no idea.
• Covered, no prior authorization. For a woman whose history flags risk, Medi-Cal deems the test and counseling medically necessary, and private plans that cover genetic testing — Kaiser included — must cover it without prior authorization, so cost and paperwork are never the reason she doesn't find out.
• Privacy locked. Results are protected by California's medical-confidentiality law and by CalGINA, the state genetic-nondiscrimination law authored by Alex Padilla in 2011, plus federal GINA.
• Her choice, full stop. Built on California's Hereditary Disorders Act, which already says the decision to bear children belongs to the individual. The act does not direct or coerce any reproductive decision, cannot be used for prenatal screening, and the state cannot widen it without a new vote of the Legislature. The information she gets must be accurate, balanced, and nondirective — written with Fragile X families, and including what it's like to live with Fragile X.

Read the bill

Tap any page to read it full size.  Download the full bill + one-page brief (PDF)

Endorsed by

Clinician, researcher, and advocate endorsements are being gathered now and will appear here — each one confirmed with the endorser before it's published.

Are you a clinician, researcher, or genetic counselor who wants to endorse the Fragile X Carrier Act? Endorse the Fragile X Carrier Act — send your name, title, affiliation, and one sentence in your own words. Endorsements are listed as personal unless your institution has approved its name in writing.

Bring this to your state

The Fragile X Carrier Act is written for California — but the model works in any state. We can reproduce this bill for your state. Want to bring it home? Just message us and we'll help you get it moving.

Add your name

California residents: add your name in support using the form below. Please include your ZIP code in your message — legislators count constituents, and your ZIP is what makes your voice count in your district.