Genetic Testing and Insurance: What Carriers, Agencies, and Consumers Need to Know

It sounds a little sci-fi: Swab your mouth, drop it in a test tube, get a readout of ancestral causes of death and statistical analyses of the markers for health you should keep your eyes on.

This future isn’t as distant as you might imagine, and in fact, might already be here: genetic testing is an increasingly common part of healthcare. The opportunities that come with new technological applications also often come with some risks, new ethical dilemmas, and considerations for the insurance industry. Genetic testing is no exception.

When it comes to insurance, as genetic testing technology evolves, insurance carriers, agencies, and regulators will face important questions about how genetic information should be used in underwriting, compliance, privacy protection, and insurance operations. Understanding the relationship between genetic testing and insurance is increasingly essential for organizations navigating a rapidly changing regulatory environment.

At AgentSync, we’re big on ethics – building a business on helping people stay compliant does that to you. While we’re taking a peek at high-level considerations, make sure if you work with anything adjacent to genetic testing that you’re following real legal best practices and not just our (admittedly super cool) blog.

Photo by Sangharsh Lohakare on Unsplash 

Current approaches to genetic testing and health

Genetic testing has become fairly routine in a few areas of health care – anyone who has had the unfortunate experience of undergoing breast cancer treatment, or those who have tested for colon cancer markers following the diagnosis of a family member may be familiar with these tests. 

But even outside of these specific circumstances, in the past several years, genetic testing has become a more common and medically accepted practice, with as many as 40% of Americans having undergone at least one genetic test in their life. 

While it can be a helpful tool in evaluating risk for certain conditions and diseases, it is important to note that having a genetic marker for something is not the same as a diagnosis of said condition, and some tests still can give false results. Because of this, in years past, the Center for Disease Control has advised consumers to be cautious in their use and interpretation of genetic testing. There can still be a gap between the raw data (a genetic variant being identified) and its interpretation (whether or not that variant will affect a person’s health). 

Healthcare interpretation aside, there are considerable privacy concerns surrounding genetic data. So much so, that the country of France has banned all personal and recreational genetic testing, only allowing it for medical, scientific, or juridical purposes. While their reasons for this are multi-faceted, consumer privacy is one of the biggest concerns they are addressing through the ban. 

These tensions of current limitations and future opportunities- certainly compete in the medical world, and no less so when it comes to insurance. 

Health insurance considerations for gene testing

Predisposed to a chronic illnesses? Early markers for potential cancer? Knowing you have a heightened potential for certain illnesses can give you tools in the form of preventative care and in terms of planning for “if” becoming “when.” 

Knowing you may be predisposed to stomach cancer could make you more conscious of your diet and screening practices. Certain conditions may make you inclined to have end-of-life conversations and adequate planning like advanced health care directives in place earlier than otherwise. As far as health care goes, you might also be inclined to consider certain wrap-around coverage options, or vet policies for chronic care or cancer coverage.

Having this information can empower you to be better-prepared for the health conditions you may face. As a result, health insurance that uses genetic information to help consumers live healthier lives may save in the long run by embracing targeted preventative care.

Further, if it’s ordered by a doctor, some kinds of genetic tests are covered by health insurance. 

For those in the health care industry before the Affordable Care Act (ACA), the premise of genetic testing might raise a few thoughts about exclusions from care. After all, if you’re underwriting health insurance, wouldn’t knowing about someone’s predisposition for certain illnesses be a point of concern, possibly crossing into that pre-existing condition gap that the ACA targeted in health care policies?

The ethics of this can get dicey. People need health care, period. And even a genetic predisposal is not the same thing as a certainty or inevitability. Having markers for some diseases can be overcome with lifestyle changes. Others are just guesswork altogether, with plenty of limitations inherent in emerging technologies. Making a judgment about insurance qualifications and pricing based on diseases someone may or may not ever have carries a lot of weight.

With all this in mind, genetic testing raises important questions about data usage, consumer protections, and regulatory oversight. While federal law generally limits the use of genetic information in health insurance underwriting, insurance carriers must still ensure their data collection practices, underwriting guidelines, and compliance processes align with evolving regulations.

GINA and federal regulation

When it comes to health insurance, earlier federal legislation firmly puts your genetic profile in the column of “pros” not “cons.” Congress passed the Genetic Information Nondiscrimination Act (GINA) in 2008 to keep health insurers from using a person’s genetic tests as a factor in coverage. (Unrelated to the scope of this article, but still interesting: Part II of GINA prohibits genetic testing from being used as the basis of your employment, as well.)

While GINA doesn’t apply to employers with fewer than 15 employees, the majority of U.S. residents are protected from health insurance requirements for genetic tests.

That’s not to say that there aren’t any concerns as far as health care considerations and genetic testing goes. For one thing, there are still many underlying privacy concerns regarding such a deeply personal and revealing set of data as is gathered in genetic testing. Like, molecular-level privacy. For another, is it worth the anxiety of learning at age 27 that you might have a marker for colon cancer that, if it happens – IF – won’t likely be until you’re 70-plus?

For those of us in the insurance industry, especially if we are a carrier or agency operating across multiple states, it’s important to recognize that federal regulations are only one part of the compliance landscape. State insurance departments may impose additional requirements governing privacy, underwriting practices, consumer disclosures, and the use of emerging health technologies. Staying up to date and in compliance with current regulations is one of many operational challenges we face in the field. 

Other insurance issues with genetic testing

While health insurance is often the first thing that comes to mind with something like a person’s intimate health history, GINA makes it a mostly non-issue. However, the real trouble of genetic testing and insurance comes down to other coverages: life, disability, and long-term care.

Life, disability, and long-term care insurance all price and qualify coverage based on personal factors, such as family history, lifestyle, and other personal data. And, while ordering genetic tests isn’t currently standard procedure for insurance carriers, some carriers request that applicants include test results if they have them. 

This does open up a can of worms. When your cousin got you a test at Christmas last year to see if you both have Neanderthal genes, or when you and your mom tested to find the destination for that big heritage trip, did you intend to also exclude yourself from long-term care coverage down the line?

Or, should your qualification for a disability policy be determined by a statistical representation for a chronic illness that may never actually present itself?

Future applications of gene testing

Today genetic tests are still more novelty than anything. But, with more people testing and building family trees, data collections, and unearthing old family drama (Truly, who needs Maury Povitch when a simple search for “not my parents, DNA test” yields So. Much. Fruit.), the future of the science is undetermined.

Other areas of scientific inquiry could also add a layer of complexity, as well. Innovations in “biohacking” present dangers, but also raise questions about “fixing” genetics. Is genetic engineering a necessary evolution of humankind? Might it alter what it means to be human? If someone could alter their genetics to avoid a disease, could an insurer require that they do, regardless of their own choice for their body? Could that ever be ethical? 

As the lines blur and the insurance industry traverses the landscape of emerging-but-imprecise genetic data collection, frankly, the horizon contains only more questions. 

For today, insurers who have their eye on genetics are best served by keeping up with state regulations – heads up, California is ever-ready on the regs, and already has some rules on the books about biohacking for the past several years..

How genetic testing could impact insurance compliance operations

As genetic testing becomes more widespread, insurance organizations may face increased scrutiny regarding how such personal information is collected, stored, accessed, and used. Compliance teams will need to monitor regulatory developments affecting underwriting, consumer disclosures, privacy protections, and data governance.

For insurance carriers, MGAs, and agencies, maintaining consistent compliance processes across jurisdictions can become more difficult as regulations evolve. Organizations that rely on manual compliance workflows may struggle to keep pace with changing requirements related to emerging technologies and consumer data.Effective compliance management requires visibility into licensing requirements, regulatory changes, and operational controls that help reduce risk while supporting growth.

Speaking of keeping up with insurance regulations, that’s part of what we do at AgentSync. Check out how we can help you (even before you go full cyborg).