I had cancer as a young person and it has haunted my entire life, health insurance wise.
It makes me dismayed that the proposed G.O.P bill, the Preserving Employee Wellness Programs Act , H.R.1313, would allow employers to hide behind workplace wellness programs in a ploy to obtain the genetic information of their employees, and charge up to 30% more for insurance if they do not divulge their genetic and other health information.
Not only that, but they could obtain the genetic information of family members.
I have been without insurance several times in my life because the cost was simply too exorbitant due to having a pre-existing condition. I have been denied inclusion in workplace insurance due to having a pre-existing condition.
I can't imagine having the constant burden of my predicament be continually amplified if I had been required to share genetic information from the beginning.
What if my parents had been charged extra to have me on their insurance plan through their employer when I was younger? Or what if I were excluded from coverage on their plan?
And once I started working myself, what if my employer had demanded genetic testing results and excluded any related conditions from ever being covered in the future?
Or would I have had to pay 30% more than others? Would a choice between financial ruin or going without health care have been my destiny?
There is a current law that prevents discrimination on the basis of genetic information called GINA, the Genetic Information Nondiscrimination Act.
It exists for a reason. Our genetics should be none of our employers business, or really, nobody's business but our own.
Multiple organizations have come out against this bill, including The American Society of Human Genetics. You can see the letter they submitted to the House Committee here.
Your genetics has little to do with wellness anyway.
Genetic information most often determines susceptibility, not inevitability. The expression of genes is often modulated by behavior and exposures. But very few genes absolutely guarantee that you will get the related health condition.
So while wellness behavior is important for keeping employees healthy, knowing their genetics is not.
Let's look at an example of why employers knowing your genetics is a misguided idea.
Let's say an employer requires an employee to work night shifts, or to work with toxic materials, which are both well known to promote a variety of health problems and cancers in susceptible people. The employer could charge an employee less for insurance if they join the workplace wellness program. So far, so good.
But then they could demand that the employee divulge genetic or other health information that potentially shows cancer or other genetic susceptibilities in order to keep that insurance discount. Not so good.
GINA prohibits the use of genetic information by health insurers and employers for discrimination purposes. Participation in in workplace wellness programs and providing genetic information in those programs is voluntary, but the proposed law would now allow up to a 30% insurance cost penalty if the employee chooses to keep genetic and other health information private.
If an employee declines to divulge both their own health information and the health information of their covered spouse, the penalty allowed goes up to 60%. Ouch.
All the while, in this example, the work exposure would be a big promoter of the genetic susceptibility to manifest as a health problem or cancer, in addition to any illness promoting behaviors of the employee. But the employer could shift financial penalty to the employee.
Employers accessing genetic information is discriminatory.
Most detrimental gene predispositions are turned on by bad exposures and behaviors, and turned off by good exposures and behavior. In the big scheme of things, the best thing a person can do is to make sure detrimental genes are turned off by adopting good behaviors and avoiding toxic exposures.
Run-of-the mill genetic susceptibilities are the vast majority. To counteract those susceptibilities employers should indeed encourage their employees to take control of their wellness, not penalize them.
There is no need for the employer to know the actual genetics. Employers should also ensure healthy working conditions. To be fair, employees should be seeking wellness on their own as well.
On the other hand, especially strong genetic susceptibilities are much less common, and are much more beyond the control of the person. Speaking from personal experience, to penalize these people is purely discriminatory.
Why would an employer even need to know your genetics?
I can only think of a couple reasons that an employer, either directly or indirectly, would want to know your genetic information.
To figure out a way to kick you off their insurance plan entirely.
Or to somehow make you pay more to compensate for what you might cost them should you get sick.
The social danger of sorting people by genetics.
As a society, have we determined that our genes determine our human worth, based upon what we might cost financially?
Are our lives and our livelihoods to be determined by whether or not we are in the fittest gene pool? Will our employers be the ones that control our health care, and our financial burdens, by way of our genes?
Yes, it is true that Americans as whole have a lot of room for improvement in taking responsibility for their own wellness.
We should not mark people as genetically tainted and then penalize them for genetics they can do nothing about. Especially since genetics is not destiny much of the time.
What we do need to do is modulate our genetics by maximizing good behaviors and reducing toxic exposures, in the workplace and at home.