At-home DNA tests have exploded in popularity over the past several years, but customers don’t just find out where their family is from, or if they have family members they didn’t know about. They can also get information about their own DNA and genetics, which can provide clues about potential health risks.
Now, some people are being discriminated against because of their genetic makeup. Kristen V. Brown, a staff writer at The Atlantic has written about this. Brown joined The Show to talk about how common it is that someone gets genetic data that can be used to predict future illnesses, and then have these other negative consequences come along because of that.
Full conversation
KRISTEN V. BROWN: Yeah. So I had that very same question. I have covered DNA testing for almost a decade, and since even long before I covered it, people have worried that if you did a DNA test, if you shared that DNA, it could come back to bite you in some way. that someone might discriminate against you because of it.
And as long as I have covered it, people talk about this like a hypothetical, like a future potential thing that might happen but hasn’t happened yet. And so I started to wonder, has it really not happened? And so I actually just started reaching out to advocacy groups for diseases that have a genetic link and asking them, “Have you heard of this? Do you have members of your community who have been discriminated against in some way because they have a genetic risk of these illnesses?”
And from so many of these organizations, I heard back, “Oh yeah, that totally happens.”
MARK BRODIE: And in what ways are people being discriminated against?
BROWN: The number of people who have a single-gene mutation that puts them at high risk of a disease like cancer, people who have these problematic mutations of the BRCA gene, for example, or a gene that puts them at risk of ALS — those are all rare genes. And the people I found are all in that camp.
They found out they had a genetic propensity that was rare that put them at higher risk for an illness. And then an insurer found out — a life or long-term care disability insurer — and they denied them a policy based on that or raised their rates based on that.
BRODIE: How is it legal that these companies are discriminating against potential customers or actual customers based on their genetic information?
BROWN: Oh, let’s go down a rabbit hole and talk about loopholes and laws. So in 2008, the U.S. passed the Genetic Information Nondiscrimination Act, which does what it sounds like it does. It prevents against discrimination based on your genes. But it was very hard to get this law passed. It took over a decade. And so they had to carve out some exceptions. They had to do some bargaining to get it passed.
And the bargains they made were that they exempted certain kinds of insurance from having to comply with it. And that included disability insurance, life insurance and long-term care insurance. So health insurers cannot discriminate against you based on your DNA. Employers can’t. But a lot of other people can. They are not subject to this law.
And if you have, potentially debilitating illness lurking in your genome like ALS, you really want long-term care insurance. That’s what means you have insurance that provides for your care once the disease starts presenting and your body starts degenerating.
So even though I think a lot of people don’t think about long-term care insurance, or they have life insurance from your employer. But if you have a risk of these conditions, these kinds of insurance can be actually really, really important.
BRODIE: Are you finding that there are people who are maybe choosing not to find out? Like somebody who maybe has a family member who had a kind of cancer or Alzheimer’s or something like that and are saying, “Well, look, I might need this kind of care later on. It might be better for me not to know ahead of time because I need to be able to get long-term care insurance, or I need to be able to get life insurance, and if I have this information, I might not be able to get it”?
BROWN: Yeah. Genetic counselors advise people who are worried that they have a risk because of a family history, that they do get all their sort of insurance ducks in a row before they go ahead and do a test for that very reason. And the concern is that because of that fear, people aren’t getting tested or are not participating in research.
And of course, being tested for like the BRCA gene actually lowers your risk of a bad outcome, right? Because you can go for the screenings. You can have preventative surgeries if necessary. And that actually makes you less at risk from having really invasive, serious forms of the disease eventually.
Now that’s not true for every genetic mutation. If you have ALS, there’s not really anything you can do about it. We don’t really have any treatments.
But a lot of researchers are really worried that because of the fear of discrimination, people are not getting information that could help them deal with future health problems.
BRODIE: It’s really interesting because, as you point out, in some cases — like if you get the information that you are maybe more prone to breast cancer, prostate cancer, more treatable illnesses — it can actually, I would imagine, save insurance companies money as opposed to you not knowing and finding out later and needing maybe more intensive treatment and potentially having worse outcomes.
BROWN: Yeah, it actually would make you a less risky person to insure if you had this information. The irony is that insurers, the business of insurance requires that they insure people. And because we all have something in our gene that’s problematic, I don’t think it’s that in the long run, we’ll all be denied policies. Because if you’re not insuring people, then you don’t have much of a business, right?
I think the bigger thing is that we’re going to find that we’re paying higher rates based on something that may or may not happen in the future. I talked to one researcher who raised something really interesting to me. All Alzheimer’s is not genetic, but there are some genes that are correlated with a very strong chance of developing Alzheimer’s later in life.
And in particular, they found that this one gene, if people have two copies of a bad mutation of it, they could have as much as a 60% chance of developing the disease. And some people have proposed that that’s equivalent to like stage zero of the disease, like you’re going to get it and you just don’t know it yet.
And if we start looking at our genes like that as deterministic, then we’re really treating people like they have illnesses that they actually might not ever have.
BRODIE: Does it seem as though there’s any effort to try to close some of these loopholes, so that people can get the information that could be helpful to them and not have it hurt them financially down the road?
BROWN: Yeah. Some of the disease advocacy groups are really interested in closing these loopholes. And there’s a couple of states where they have been working with lawmakers and others to try and pass better laws. Florida already has a really good law on the books that closes these loopholes. New York has explored it. South Carolina has explored it.
So far, other than Florida, none of these efforts have been successful. But I know that next year, a couple of these states are planning to try and introduce legislation again and see whether it might make a father the next time around.
