If you have taken 23andMe or another genetic test, you may have unwittingly excluded yourself from getting long-term care or disability insurance – or make coverage eye-wateringly expensive.
Disability insurance helps to cover living expenses if a person cannot work due to an injury or illness, and long-term insurance pays expenditures for people who need help with day-to-day activities due to illnesses or age.
Both forms are particularly important for people with degenerative conditions, many of which are the product of faulty DNA.
A law against genetic information passed in 2008 and the Affordable Care Act (ACA) each keep employers and general health insurers from discriminating against people based on their DNA.
But for disability and long term care, everything is fair game.
Genetic tests can help you understand your risks for conditions including Parkinson’s and Alzheimer’s, but some insurers can use that information to deny you coverage or charge more
We can now test for genes that code for more than 2,000 inherited condition.
Once a high-tech tool used by doctors to confirm diagnoses or by law enforcement to catch criminals, now anyone can send their spit off for DNA sequencing for $150.
The widespread availability of genetic testing could revolutionize how we approach health and mitigate our own risks, but ease of access has also, arguably, watered the technology down to a novelty.
Last December, medical ethicists even published warnings that families and friends should think twice before giving a genetic test as a stocking stuffer.
The information you get back could be more traumatizing than you suspected, and it could even be used against you by certain insurers.
It is a phenomenon that generated widespread fear when DNA testing started to proliferate and, in response, the Genetic Information Nondiscrimination Act (GINA) was signed into law a little over a decade ago.
GINA ‘protects people from their employees or their health policies from using their genetic information to set their rates or to exclude them from employment or coverage,’ explains Dr Sheldon Krimsky.
‘But policies like long-term care and disability policies don’t fall under that act.’
Dr Krimsky is a professor of urban and environmental policy and planning and the chair of the Council for Responsible Genetics.
First thanks to GINA, and later thanks to the ACA’s pre-existing condition clause, health insurers cannot turn you down if you already have an illness when you apply for coverage.
The Council also took part in discussions of GINA, advocating for patient protections before Congress. Somewhere along the way, long term care and disability insurance got dropped from those talks.
‘Long term care is especially important for two diseases with genetic risk factors: Parkinson’s and Alzheimer’s,’ says Dr Krimsky.
About 7.2 million Americans own long term care policies to ensure that they will have the assistance they cannot fully take care of themselves in the future.
‘I think long term care companies would be very interested in knowing who the most vulnerable [to those conditions] are,’ says Dr Krimsky.
Unsurprisingly, 23andMe puts both conditions at the top of the list of what its tests can assess your risks for.
The degenerative conditions leave millions of Americans unable to care for themselves, which is exactly the predicament that long-term insurance is intended to help alleviate.
‘Having a genetic condition is about as pre-existing as you can get, but in back rooms where [Congress] was negotiating with all the people with all the insurance companies and hearing from the public…this is what we ended up with,’ says Dr Krimsky.
What we’ve ended up with leaves long term insurance companies a wide open opportunity to use genetic information to save themselves money.
‘There are no laws preventing the use of genetic information for those areas of insurance,’ Dr Krimsky says.
‘I think if a study were done, we’d see that these kinds of health care companies probably are discriminating.
‘If you’re running a company that’s going to be funding somebody with long term care, you’d rather not have people with those [genetic] conditions. As a result, if you can use genetic information to help you’re company, why not use it, that’s what capitalism is all about: trying to reduce your costs and and your risks.’