Dr. Mike Janicek: One of the most common questions we get when we talk about genetics with patients
and mutations is how that can affect me, my family, insurability, and the simple answer
is there are Federal and State Laws all over the place that protect patients against genetic
discrimination.
The first civil rights legislation of 21st century was Gina’s law signed by Bush that
prevents discrimination against patients with a genetic mutation.
At the state level, there are laws to prevent that.
Obamacare actually one of the few good things about it in my opinion is that it has expanded
access to preventive genetic testing, so the concerns are out there, but they are not real
in real life.
I think the only real one might be with life insurance because they have a right to look
at your risk profile and base your insurance premiums based on that, so whether you do
genetic testing or not, if you have a family history, they are going to ask about it, so
I think that part is little less clear, but I think frankly if you got a genetic mutation,
you have got other problems and worrying about your life insurance premiums, I think its
far more important to grapple with that information and it’s implications than to worry about
some of the less important fallouts, so there really is no major fallout from this.
Understanding disease predisposition is something that insurance companies actually like to
do, believe it or not, they actually like to pay for genetic testing because they like
to identify people at risk, not to let them go, but actually let them have risk reduction
surgery because paying for cancer treatment is far-far-far more expensive than paying
for risk reduction surgery, so that is why almost all insurance companies will pay for
genetic counselling or testing in the appropriate individual because it makes economic sense
for them and of course it makes good sense for the patients in their welfare, so there
is no down side in my opinion from that point of view, I think ignorance in the sense of
just not knowing and understanding is really what pushes people towards not getting genetic
counseling or testing, but once you fully understand what’s at stake and understand
the laws and understand what it is all about, there are few good excuses not to get genetic
counselling and testing and I think the valid ones are psychological, if someone just cannot
deal with that at certain point in their life or is afraid, I think that’s a valid reason,
but usually with good genetic counselling and explaining things in the common sense
terms, who wouldn’t want to know if they are at risk.
If you see a child in the street and there is a car coming their way, wouldn’t you
want to get them out of the way of an incoming car.
In many ways, genetics in cancer prevents in the same way.
Why would you want to turn away from the risk and why would you want to expose yourself
to potential harm, so if you break it down into simple common sense, most people will
eventually embrace it, but it should be done at the patient’s time and discussion.
It should never be forced on them.
They should never be pressured for it.
I think the one ethical problem is say a mother is at risk and should be tested and the daughter
wants to know for her sake, but the mother doesn’t want to test, what is her moral
and ethical obligation to her daughter, that’s a personal question.
There is certainly no legal obligation to test for the sake of other family members,
but I think there is a moral and ethical obligation that if your physician says you may be at
risk and the genetic information may impact others in your family that may be you do have
a moral and ethical obligation to do that for your family and even if you don’t like
your family members, I think you still should do it.