What about scenario 1?

Scenario 1

Q: Could she get tested elsewhere if you refused?

We talk to each other. There's a large network of genetic counselors who meet and talk. There are guidelines and in fact some of the guidelines that I'm giving you now, which are very recent, say that the right not to know should not supersede the right to know, unless there are other mitigating factors. So, in fact, I know her very well. First of all, you need to look at the merits of every situation because there's always mitigating factors.

Secondly, in this situation, you have to look at the compelling reasons. Again, we counsel the family. Why do you need this information? Why do you want this information? Do you understand that by asking this question, you may in turn diagnose your dad, if you are gene positive. And interestingly enough, some people really have not thought about that. So you bring up the issues, you say it out loud. Do you understand that if you're found to be gene positive, your dad has no choice but to know that he is, too.

That's exactly what we're saying, that you counsel the family, you look at the family dynamics. You ask the young adult child, how are you going to communicate with your mom or your dad, how are you going to let them know? Have you thought this through?

Q: Well, first it's like the father didn't want to know.

Exactly. So are you capable of getting this information and then not saying anything. Is your family dynamic going to support that. Is that possible in your family? And the adult child may say yes or no. There are certainly some adult children who have very poor or very minimal relationships with their parents. And they say to me "Look, I never see my mom. I don't talk to my dad. This is information I want for me." But if the family is a close family unit, they really have to look at how they're going to handle this information. The same scenario too, where the dad is at risk, doesn't want to know. There's a pregnancy. The mom wants to know. Now, can you imagine doing prenatal diagnosis and in one fell swoop you find out your fetus has the gene, therefore, your husband has the gene and you have to think about what you're going to do with this pregnancy. One minutes worth of information gives you all of that at once. It is agonizing.

Q: I was just kind of curious about where the sib really wanted to know if the father was positive.

Well, first counsel the family, let them know the implications. If the son really wants the information, he's entitled to it. And we can't deny him the information based on the father's right not to know. But what we can do is really try to get the family together, talk about it, make sure that they understand the possible detrimental effects of this information to the dad who really doesn't want to know.


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