Your DNA Shouldn’t Cost You Your Insurance: What HD Families Need to Know

A paper recently published in Nature Medicine caught our attention. In it, researchers celebrated Australia’s new federal law banning life insurance companies from using genetic test results when deciding whether to cover you, or how much to charge you. It’s a landmark moment, and a reminder that for Huntington’s disease (HD) families in the United States, this kind of protection remains frustratingly out of reach.

We want to use Australia’s milestone as a jumping-off point to talk about something the HD community has been navigating for decades: the concrete ways that the legal landscape around genetic testing can shape the decisions people make – about whether to get tested, whether to participate in research, and whether they can afford to plan for the future.

So what’s the problem, exactly?

If you’re from an HD family and you choose to get a predictive genetic test, one of two things is true: you either carry the expanded CAG repeat that causes HD, or you don’t. If you are a gene carrier, you will – barring a clinical breakthrough – develop the disease.

That is a fundamentally different situation from someone spitting in a tube so that 23andMe can tell them they’re 12% Scandinavian. It’s also different from someone testing for a cancer predisposition gene that raises their lifetime risk by a meaningful but still probabilistic amount. For most hereditary conditions, a positive result tells you your odds. For HD, a positive result tells you your fate.

And yet in the United States, federal law provides remarkably limited protection for people in that situation.

What GINA actually does, and doesn’t, do

You may have heard of GINA: the Genetic Information Nondiscrimination Act, signed into law in 2008. GINA is a real and important protection, but it is frequently misunderstood, often in ways that give people more confidence in their coverage than they actually have.

One peer-reviewed study found that people who believed they were knowledgeable about GINA tended to overestimate how broadly it applied, assuming, for instance, that it covered life, disability, and long-term care insurance. A collaborative study from 2012 led by Dr. Ray Dorsey specifically examining HD-affected individuals found that the majority failed to correctly identify GINA’s actual protections. Thinking you’re covered when you’re not isn’t just a misconception, it can be a trap.

Here is what GINA actually does: it protects against genetic discrimination in health insurance and employment. It does not cover life insurance, disability insurance, or long-term care insurance.

That’s the core gap. Life insurance. Disability insurance. Long-term care insurance. The exact policies that matter most to someone facing a neurodegenerative disease.

The gaps run deeper still. GINA protects against discrimination based on positive gene status in healthy individuals who carry the HD gene but do not yet have symptoms. Once a person actually has signs or symptoms of the disease, that protection disappears. For HD gene-positive individuals, who will inevitably develop symptoms, GINA’s protection is not a permanent shield, it’s a countdown clock.

GINA also does not apply to small businesses with fewer than 15 employees, or to people insured through certain government programs such as Tricare or the Indian Health Service.

The American Medical Association has been direct about this: GINA leaves individuals vulnerable to discrimination in areas such as life, long-term care, and disability insurance, and does not extend to certain sectors of the population.

For HD families, this creates a situation where the practical advice given by genetic counselors is essentially: if you want life or long-term care insurance, get it before you get tested. Once you test positive, you’re generally ineligible. Some states have laws offering additional protections beyond GINA, but these are inconsistent across the country, creating a patchwork of coverage that differs depending on where you live.

The stakes are higher for HD families

The Nature Medicine article that prompted this piece made a claim that gave us pause. It suggested that people who already have a diagnosed condition or a strong family history of disease may view insurance concerns as “less consequential” when deciding whether to get tested, presumably because their insurance situation may already be affected by that history.

We’d push back on that, hard.

People who come to genetic testing because of a known family history of a deterministic disease where the inheritance pattern is 50/50 and a positive result means near-certain disease have the most to lose from a positive result, not the least.

The 23andMe customer who finds out they have a variant weakly associated with a slightly elevated risk of cancer is dealing with probabilistic information. The person from an HD family who tests positive is dealing with a certainty. The person curious about their ancestry who stumbles across an incidental health finding faces a different calculus entirely.

The people most likely to need life and long-term care insurance, the people for whom financial planning in the face of a serious illness is genuinely urgent, are exactly the people who, under current US law, lose access to those products the moment they get the information that makes such planning necessary.

That’s not less consequential. That is the consequence.

Research backs this up. A Canadian study of people at risk for HD found that nearly 40% reported experiences of genetic discrimination, most commonly in insurance contexts, and that psychological distress was significantly associated with those experiences.

The decision not to test has real costs too

Predictive testing rates for HD are under 20% in Europe and only 5–7% in the United States. That low uptake is not explained by lack of interest. People from HD families are intensely motivated to understand their own risk for reproductive planning, for financial planning, for making the most of their time. The fear of insurance consequences has led some people to choose not to test, or to seek testing anonymously in ways that disconnect their results from their medical record.

That last point has real downstream consequences. People who want to participate in clinical trials, particularly as we move toward prevention trials that enroll presymptomatic gene-positive individuals, would typically need a confirmed genetic result in their medical record. The insurance system, as currently constructed in the US, creates structural pressure against the very testing that enables research participation.

This is not an abstract concern. It affects how quickly trials enroll, and ultimately how quickly treatments reach people who need them.

A look across the Atlantic: the UK situation

About 12% of HDBuzz readers are in the United Kingdom, and there are policies there worth shining a light on.

The UK operates under the Code on Genetic Testing and Insurance, a voluntary agreement between the government and the Association of British Insurers. Under this Code, insurers agree not to ask for or take into account the result of a predictive genetic test when you apply for insurance. The sole exception is if you are applying for life insurance over £500,000 and have had a predictive genetic test for Huntington’s disease.

That means only one condition currently meets the criteria for mandatory disclosure under the UK Code, which is a predictive genetic test for HD in relation to applications for life insurance over £500,000.

Of all the hereditary conditions for which predictive testing exists – every cancer predisposition gene, every cardiac condition, every neurological disorder – HD is the only one singled out for an exception. The reason comes down to mathematics and statistics, because a positive HD test is among the most predictive results in all of genetics. It is, in a sense, a backhanded acknowledgment of how serious and certain the disease is. But it also means that HD families in the UK face a disclosure requirement that no other genetic testing group does when applying for substantial life insurance.

Overall, the UK framework offers considerably stronger protections than the US. Insurers cannot, for instance, ask about most genetic test results at all. But the HD exception is a real one, and it is worth knowing about.

The horizon problem: modifier genes

Here is a wrinkle that the HD community will need to start thinking about, and that we haven’t seen discussed much in the context of insurance and discrimination law.

What are modifier genes?

We know that people with the same CAG repeat length can have dramatically different disease trajectories with onset separated by decades, causing disease severity that varies widely. A large part of that variation is driven by genetic modifiers: small changes in other genes that drive when and how severely the disease manifests.

Genome-wide association studies have identified FAN1 as one of the most significant modifiers for HD age of onset. Other candidate modifier genes include MSH3, MLH1, PMS1, and LIG1, all of which function in DNA repair. Higher FAN1 expression is associated with delayed onset and slower progression of HD, suggesting it plays a protective role.

Modifier genes and cancer

Now here’s where it gets complicated. These are not HD-specific genes. They are DNA mismatch repair (MMR) genes. Defects in MMR can lead to greatly elevated mutation rates that can drive carcinogenesis.

MMR genes are the same family of genes that, when mutated, underlies Lynch syndrome, one of the most common hereditary cancer predisposition syndromes. Lynch syndrome is caused by MMR defects and is most often characterized by early-onset colorectal cancer and many other cancer types. Rare mutations in MSH3 and FAN1 are specifically known to cause rare forms of cancer.

And MMR genes are just what we know about now. As modifier research advances, we will almost certainly identify variants in other genes, some with disease associations we don’t yet understand. Information entered into a medical record today could carry implications years down the line that nobody anticipated when the test was taken.

Screening for modifier genes

We’re increasingly hearing from HD community members asking whether they can be screened for modifier genes, curious about whether knowing their modifier status might tell them something useful about their own disease trajectory. That is a completely reasonable question, and it reflects how sophisticated HD community members have become in their understanding of emerging science.

But there’s a dimension to that question that hasn’t been fully reckoned with: if modifier testing reveals something about the function of another gene, that information may not only be relevant to HD. It may carry independent implications for your risk around other diseases, revealing information that, in the United States, could theoretically affect your insurability for products GINA doesn’t cover.

This is not an argument against pursuing modifier testing if it becomes clinically available. Rather, it underscores the need for a more sophisticated legal framework governing genetic privacy before that testing may become routine. And it is a vivid illustration of why partial protections – ones that cover some genetic results but not others, some insurance products but not others – become increasingly inadequate as a single genetic test becomes more informative. 

What does progress look like?

Australia’s new legislation implements a total ban on life insurers using genetic test results in underwriting, without financial limits or exclusions for specific conditions. This provides certainty that undertaking genetic testing, including through participation in health or medical research, will not impact an individual’s ability to obtain life insurance coverage.

Canada’s Genetic Nondiscrimination Act, passed in 2017, similarly prohibits discriminatory use of genetic information across goods and services broadly, including both life and health insurance.

The United Kingdom’s voluntary Code on Genetic Testing and Insurance offers broader protections than the US in that insurers cannot ask about most predictive genetic test results at all. But as we highlighted, it remains a voluntary industry agreement rather than legislation, and it still carves out an exception for HD in high-value life insurance applications.

Unlike other countries, the United States has no equivalent federal framework for life, disability, or long-term care insurance. What exists instead is a patchwork, with GINA’s health insurance protections, state-level laws of varying strength, and the practical advice to buy insurance before you test if you want to keep your options open. This current framework requires families to make major financial decisions before they have the genetic information that would help them make those decisions. For the HD community in particular, it creates real barriers to testing, to research participation, and to the kind of informed life planning that people in HD families deserve to pursue.

The science of HD is advancing faster than the laws meant to protect the people living with it. Australia just took a meaningful step forward. Legislators in the UK, the US, and around the world should be taking notes.

Summary

• Australia has passed landmark legislation banning life insurers from using genetic test results in underwriting, a protection HD families in the US do not have
• GINA, the US federal law most people assume covers them, only protects health insurance and employment, leaving life, disability, and long-term care insurance are explicitly excluded
• GINA’s protections also disappear once symptoms appear, making it a temporary shield for HD gene-positive individuals
• People from HD families face higher insurance stakes than the average person who gets genetic testing
• In the UK, HD is the only condition for which insurers can require disclosure of a predictive genetic test result, serving as a backhanded acknowledgment of how certain the disease is
• As modifier gene testing moves closer to clinical use, the insurance implications could extend beyond HD itself into risks of other diseases, like cancer
• While Canada and Australia have federal protections covering life insurance, the US patchwork of state laws and GINA leaves HD families exposed

For more on GINA and HD, the Huntington’s Disease Society of America maintains a helpful FAQ at hdsa.org. For information about predictive testing, please speak with a certified genetic counselor familiar with HD.