Advocacy

No one should be afraid to know their risk

We work so that learning your genetic risk never becomes a reason you can be denied coverage. That fight has taken us from the finish line to the state capitol.

Why we advocate

Fear shouldn’t stand between a family and an answer

Every year we meet people who suspect that cancer runs in their family, but who hesitate to get a genetic test for one reason: they’re afraid of what it could cost them later. Not the price of the test, but the fear that a result could be used to deny them life insurance, disability coverage, or long-term care.

That fear is real, and in most states it is not unfounded. So awareness alone isn’t enough. If we ask people to learn their risk, we owe it to them to help make it safe to do so. That is what advocacy means for us: protecting the people who do the brave thing and get tested.

The gap in the law

What’s protected — and what isn’t

Protected today: A federal law, the Genetic Information Nondiscrimination Act of 2008 (GINA), makes it illegal to use your genetic information against you in health insurance and employment.

Not protected by GINA: life, disability, and long-term care insurance. In most states, those insurers can still ask for and use genetic test results. Closing that gap is up to each state.

At the state capitol

Our founder testified for Nebraska LB 338

In 2025, Nebraska State Senator Dave Wordekemper of Fremont introduced Legislative Bill 338, which would prohibit life, disability, and long-term care insurers from using a person’s genetic information to deny coverage, limit benefits, or raise premiums. It was modeled on a 2020 Florida law — the first of its kind in the nation.

Denise took the mic

Our founder, Denise Ibsen Cole — a BRCA1 previvor — gave in-person testimony in support of LB 338 before the Legislature’s Banking, Commerce and Insurance Committee, and submitted her written testimony for the record. She spoke alongside the national hereditary-cancer nonprofit FORCE, the Kamie K. Preston Hereditary Cancer Foundation, oncologists, and genetic counselors. Their message was the same one we hear at every event: people are delaying or refusing testing because they’re worried about how the results could be used.

In her words

“I cannot change the fact that they might have a genetic mutation, but I am hoping we can change the fact that they might end up with late-stage cancer. This bill helps remove one more barrier for people to take that initial step to get the needed genetic testing.”

Denise Ibsen Cole · testimony in support of LB 338, Nebraska Legislature, Feb. 11, 2025

Where LB 338 stands. The bill was introduced in January 2025 and heard by the Banking, Commerce and Insurance Committee. It was carried over into the 2026 session and, on April 17, 2026, was indefinitely postponed — meaning it did not pass. The protection gap it aimed to close is still open. We’ll keep showing up until it isn’t.

Progress worth naming

Nebraska has taken real steps — and there’s more to do

2024 · passed

Your genetic data got new privacy protection

In 2024, Nebraska passed LB 308 (Senator Eliot Bostar), requiring genetic-testing companies to get your written permission before sharing your genetic data with insurers or employers. It passed the Legislature unanimously. A meaningful win for privacy.

Still open

How that data can be used

Privacy is one half of the problem. The other half — whether life, disability, and long-term care insurers can use genetic information at all — is what LB 338 set out to address, and what remains unfinished in Nebraska.

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How you can help move this forward

Follow the issue

We’ll share when protections like these come back up in Nebraska, and how to weigh in. Sign up to stay close to the work.

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Contact your senator

Nebraska’s Legislature is unicameral — you have one state senator, and they answer to you. A short note about why this matters carries weight.

Find your senator

Tell us your why

Personal stories move policy more than statistics do. If insurance fear has touched your family, we’d like to hear from you.

Share your story

Behind every step

Advocacy is part of the mission, not a side project.

Awareness gets people to the starting line. Advocacy makes sure the path forward is safe. Your support helps us do both.

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Sources

Facts on this page are drawn from public records and reputable reporting, current as of August 2026:

Nebraska Legislature — LB 338 (109th Legislature) and its action history (introduced Jan. 2025; indefinitely postponed April 17, 2026).
Nebraska Examiner — “Genetic info would be shielded from life, disability, long-term care insurance under Nebraska bill” (Feb. 20, 2025).
National Human Genome Research Institute — Genetic Information Nondiscrimination Act (GINA) of 2008, which covers health insurance and employment but not life, disability, or long-term care insurance.
Nebraska Legislature — LB 308 (2024), genetic-data privacy, signed into law.