Rules for 50/50 Chances

Author:Kate McGovern
Language: eng
Format: epub
ISBN: 9780374301606
Publisher: Farrar, Straus and Giroux (BYR)

Sixteen

Roxanna, the genetic counselor Dr. Howard referred me to, looks like a typical Cambridge therapist—flowy linen pants, a kind of purple tunic top, and a heavy beaded necklace. She has one of those granny chains attached to her glasses so she won’t lose them, although it doesn’t seem to help much. In the first ten minutes of our first session, I watch her search high and low for those glasses while they’re perched right on top of her head, nested in her spiky white hair.

She looks like a therapist, but the thing about genetic counselors is that they’re not therapists exactly. Although they’re supposed to be, more or less. I researched this. Officially, they’re supposed to practice something called “patient-centered therapy,” where they don’t tell you what to do—they’re supposed to help you make your own decision. That’s how the field of genetic counseling started out, anyway, when the main recipients were pregnant women who were at risk of carrying babies with genetic conditions. Of course, that was before there were actually any tests for the stuff, so the counselors were just working off the knowledge that something or other bad ran in the woman’s family. Back then there really wasn’t a right answer: all a counselor could tell the woman was her general risk, but they couldn’t tell her anything for sure.

That’s no longer the case, now that we have access to more information about our genes. I imagined that Roxanna would explain all my options—even though I already know what they are—and then tell me that whatever I end up doing is the right thing for me. Not the case.

In reality, Roxanna lays out all the possibilities—I take the test, I get a negative result (good); I take the test, I get a positive result (bad); I don’t take the test—and then starts pretty obviously pushing her own agenda. Which is: Rose, don’t be an idiot, don’t take the test.

Unfortunately, I have to put up with whatever pressures Roxanna wants to apply, because more than my parents, she’s the gatekeeper to my genetic information. If I want to take the test after I turn eighteen, I’ll need to see Roxanna at least three more times. They make you stretch it out, presumably to give you plenty of opportunities to change your mind. And at the end of it all, I’ll still need her sign-off. I have to pass her test before I can take my test.

“Rose, can I ask you something?” she says ever so earnestly, cocking her head to the left. She squints a little bit and makes one of those sort of solemn, close-lipped half smiles. I stare over her head. On the wall opposite there’s a mass-produced painting of some sand dunes that I think I’ve seen on sale at Target. Soothing, supposedly.

“I want you to close your eyes and imagine, just for a moment, that you take the test, and you get a positive result.”

It’s weird, isn’t it, that getting a positive result is bad news.

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