Scenario 5 Discussion:

Scenario 5

Let me take you through these. Number 5, there was a couple, John and Sara, who had a little foster girl in their care, really since birth. Unfortunately, the little girl's mom had been diagnosed with Huntington Disease, had been found not to be a fit mom and unfortunately, the dad was not in the picture. So she had very early, right after the pregnancy, gone into the foster care system.

Well, the couple who had cared for her, John and Sara, really wanted to consider adopting her but they only wanted to adopt her if she was gene negative. They called and wanted that information and as I told you, our policy is we don't test children under the age of 18 because what would you do differently? How would you parent this child differently, when there's no prevention available. Well, if you look at the sheet, I gave you some guidelines, and on the second page, there's information about testing children.

First of all, this couple was considering adoption. They were not yet even the parents. The child was at 50 percent risk of tremendous loss, and if she is found to be gene positive, what then? The other thing, whenever we have a child, the child comes with no guarantees. We have heard from people in the audience who were talking about children who were born and then found have devastating illness. As parents, we get no guarantees. You can have an amniocentesis, you can have a CVS, you can have an ultrasound. When I was pregnant, I had every test known to mankind, many times. I had the world's record for ultrasounds for pregnancy, right here. And with all that, no guarantees.

So we felt in this situation that we still could not offer gene testing for this little girl. If they were going to base their decision to be parents on that test result, then perhaps she needed new parents. Part of the guidelines talks about the need to sit down with folks and really counsel them about their choices, the implications of what they're asking for, what's going on in this decision. Yes, of course, they were told, and it turns out, the end of this story is, the little girl was not tested and they adopted her.

So it had a happy ending because they came come to some resolution that even if she's got the gene, she probably has decades of research, decades of hope, decades of possibility. What they ended up doing is realizing that they loved this little girl. So thankfully, this one had a happy ending. Any other scenarios that you want to look at?

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