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Dr. Mike Janicek: People ultimately have the right not to have a genetic test for yourself.
You have the right not to have risk reduction surgery. I mean we live in a free country.
You can ride a motorcycle without a helmet here in Arizona. I am not saying we should
force or coerce people, but what I am saying is for example, a mother who has breast cancer
and is the only living relative with cancer and the daughter wants to know for her children
and the mother won't test, I say that's a morally wrong decision. I will say that to
anyone. You can quote me on that, you know the mother does not have to know, but help
your daughter. If you have a child in the street and there is a truck barreling down
the road, don't you have an obligation to get that child out of the street, so I feel
like whether it's your daughter, whether you like her or not, it just amaze me when we
do genetic counseling and this happens more than you think, where because of these fears,
there is a question that was asked earlier and the reluctance that some people just won't
test and I think we can't force people to test, but we can talk about ethics and morality.
I am not saying it's a legal obligation to test, but I think you have a moral obligation
to test and if you don't want to be burden with information, then there is ways to keep
that information from me but that information is critical. So the case I mentioned, if a
mother and a family is at risk for this BRCA mutation and you test the daughter say because
the mother does not want to test and the daughter is negative, you don't know anything, that's
called non-informative negative testing. You still don't know. Now of course if the daughter
is positive, then it's the moot point, but my point is if you can't get the index patient
to test that sometimes leads to a problem where the test is negative, but you don't
know if it is a true negative and then the poor woman either has to have unnecessary
risk reduction surgery. So that's why I would like to bring up that this is a moral issue
in many ways, not just a legal and a technical and medical issue.
Dr. Jay Harness: Yeah and as a matter or fact I have see stories recently Mike where patient
was informed found out she was gene positive, however, was estranged from her family. Whoa,
big issue. You know and again nobody can force her to tell the other family members that
she is gene positive, but I absolutely support your passion and enthusiasm for everything
you know
you
have said.