Laws and Legislation Protecting Those with a Genetic Predisposition



Kristie L. Kahl: What are some examples of ways genetic testing results could be discriminated against?

Lisa Schlager: Genetic testing can’t be discriminated against, but an individual can be discriminated against. We do have some laws and protections to ensure that individuals are not denied health care, for instance, or their information about their genetic predisposition to disease can be used against them to deny them employment.

Some of those laws include the Genetic Information Non-Discrimination Act, or GINA, which does cover both health insurance and employment. For that reason, it basically says that an employer cannot use that information in hiring or firing, promotions or salary decisions. In health care, it says that your genetic predisposition may not be used to deny you health insurance or increase your premiums. I will say that is for people who don’t have a manifest disease, meaning you may not have had a cancer diagnosis, we just know you’re at an increased risk. What is nice, we also have the Affordable Care Act, and that basically eliminated an opportunity for health insurers to deny coverage based on a health condition. So, between GINA and the Affordable Care Act, we have a great partnership and good protection for people who undergo genetic testing.

Unfortunately, there is an area that people are not protected and that would be life insurance, disability insurance and long-term care insurance. Those types of insurance are not covered under the GINA law, so unfortunately if someone does test positive for a mutation, a life insurance company can say to them, “I’m sorry, you carry Lynch Syndrome and we think you are a high risk, so we’re either not going to cover you or we’re going to charge you a higher premium.” Certain states have gone further to institute more protection. So, it is very important for people to know or research what their state laws are to understand their rights.

Kristie L. Kahl: Does having a genetic mutation considered a pre-existing condition, and what does that mean?

Lisa Schlager: Actually, it is not. A genetic mutation cannot be considered a pre-existing condition. On the other hand, if you have heart disease, for instance, that can be a pre-existing condition because it is actually a manifest illness or disease. Whereas, a mutation is not. It is just a predisposition to something. So, it cannot be considered a pre-existing condition for health insurance.

Kristie L. Kahl: If someone thinks they are being discriminated against, are there resources they can turn to?

Lisa Schlager: Absolutely. It depends on who the discrimination is coming from. If it’s an employer, the next step is to go to their HR Department, then they can also go to the Equal Employment Opportunity Commission. We have information about this on our website, and step-by-step instructions on what to do if you feel you’re being discriminated against.

When it comes to health insurance, the pathway is a little different. Basically, there are agencies and checks and balances. If an individual feels the information is being used improperly, they do have recourse.

Kristie L. Kahl: Can life insurance companies increase premiums after you’ve been tested?

Lisa Schlager: That’s a great question. It really depends on the policy. With life insurance, a lot of times they have the option to access your medical records. When they issue you your policy, it’s based on the information that they have. Many people ask, “If I test positive afterward, do I need to reveal that information?” Truthfully, that’s something I can’t specifically answer. It depends on the policy you have, and what the parameters around that policy are. We can say that most people with mutations do in fact get life insurance and it’s not as big of an issue that some people have feared, I suppose. Where we do see issues is if someone has had cancer, for instance, a lot of insurers will wait until five years to insure you.

Kristie L. Kahl: Are genetic tests covered by insurance?

Lisa Schlager: They are, most of the time. There are some caveats. First and foremost, for genetic testing, under the Affordable Care Act, any preventive service that gets an A or B rating from the US Preventive Services Task Force, which established guidelines for preventive care in the US, it has to be covered at no cost under the Affordable Care Act. So, that includes mammograms starting at the age of 40, or colonoscopy starting at age 50, and also BRCA genetic testing if you meet the personal and family history criteria. That criteria is outlined and if you meet a certain risk threshold, as assessed by your doctor or genetic counselor, then they can justify coverage of a BRCA test for all of the known BRCA mutations at no cost to the patient, I might add, which is wonderful. Where we run into confusion and complications sometimes is that we are now able to test for far more than BRCA mutations. Many labs are offering multi-gene panel tests that look at dozens of potential mutations, which is very informative and is actually more of a standard of care these days. Unfortunately, insurers are not required to cover this at 100%. So, frequently what we see is patients end up paying either a co-pay or out of their deductible to cover the cost of this. However, most labs have programs to ensure that patients don’t have to pay too much out of pocket. Many labs will guarantee you’ll never have to pay more than $150. If, for some reason, that amount is too difficult, there are assistance programs that provide testing at no cost.

Kristie L. Kahl: How will that affect how many people will not get tested?

Lisa Schlager: We are seeing more and more people getting tested, especially more people finding they have mutations other than the BRCA1 and BRCA2 mutations. One of the things we’ve discovered through research is about 50% of the mutations responsible for breast and ovarian cancers actually are mutations other than BRCA1 and BRCA2. Also, Lynch syndrome is more common and there are five mutations there. So, we are seeing more people expressing interest in testing. We’re seeing more people testing. One of the drawbacks is that people are a little nervous about the Affordable Care Act and its stability. So, in some cases, people are a little hesitant because they are fearful that somehow down the road it could come back and be problematic. But having a mutation cannot be used against you, regardless of the Affordable Care Act. People should not hesitate to get tested if, in fact, they think that it’s something that makes sense for them and their health care provider agrees.

Kristie L. Kahl: Where do you think we’re headed?

Lisa Schlager: We are headed toward an amazing era of what we are calling precision medicine, where we have the ability to look at a person’s genes to determine what they at risk for. And then we’re able to tailor their care. For instance, a woman who has a PALB2 mutation, for instance, might know that she has an increased risk for breast cancer, so she can start screening earlier. It will either find that cancer earlier or in some cases, prevent cancer from occurring. On the flip side, if someone is diagnosed with cancer, we now have targeted therapies, where just knowing you have a certain mutation, they can figure out what medications might be more effective for you. That is a win for everyone. We’re all at risk for something. We all have genetic mutations in our bodies. But to be able to use that information proactively, to either prevent or treat disease, is an amazing thing.

Transcript Edited for Clarity.

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