At forty-six I found out I'm a carrier for something, and the question I actually have is whether to tell my adult children, and nobody will give me a straight answer.

I'll be general about the condition on purpose, because it's rare enough that naming it plus my details would identify me to anyone who knows me. It's autosomal recessive. It's degenerative. If two carriers have a child there's a one-in-four chance that child has it, and the version that shows up in childhood is severe.

How I found out: not through a screening. Through my sister's grandchild. He was diagnosed at nineteen months in March. The genetics workup traced it back through my sister's husband's side and my sister's side, and the counselor recommended testing for siblings, and I tested, and I'm a carrier.

So is my brother. My sister is too, obviously.

My wife is not. We had her tested in June. So our two kids are each either a carrier or not — fifty-fifty — and neither of them can have an affected child unless their own partner is also a carrier.

My kids are twenty-four and twenty-one. The twenty-four-year-old is engaged, wedding in October.

Here's the actual problem, laid out as clearly as I can, because I've had it explained to me four times by two different counselors and I still think the decision is mine and I still can't make it.

The case for telling: it's their body and their information. If my daughter is a carrier and her fiancé is a carrier, that's a one-in-four risk per pregnancy, and the test for him is a cheek swab and a few hundred dollars, and knowing before rather than after is the entire point of the last thirty years of genetics.

If I say nothing and in four years there's a child, I will have withheld a cheek swab.

The case against telling, which the counselors are careful not to make but which exists: I would be handing a twenty-four-year-old woman, eight months before her wedding, a reason to re-examine whether to marry that specific man. Not a reason to reconsider children — a reason to reconsider him.

Because the swab result arrives at a particular moment in a relationship and it does something to that moment no matter what the number says.

And there's a third thing nobody has said to me and I've thought about every night:

My sister's grandson is going to die of this. Probably before he's twelve. That's the actual sentence.

And my daughter has met him. Twice. She knows he's sick. She does not know what from — my sister has kept the name of it inside her own house, which is her right.

So telling my daughter is not an abstract conversation about genetics. It is: that little boy at Easter, you could have one, here's a swab.

What I've done so far: nothing. Five months. I've read everything. I've talked to the counselor twice, and she said — correctly and uselessly — that most families tell, and that the timing is a personal decision, and that she can be in the room.

And I've talked to my wife, who thinks we tell them both after the wedding, and who may be right, and whose reasoning I don't fully trust because she wants the wedding to be a good day and so do I.

The thing I can't get past: my own parents are both dead, and one of them was a carrier, and nobody ever had any reason to know. There was an uncle who died young in 1961 and nobody in the family can tell me of what, and I now think about that man about once a day.

What I want from anybody who has been on the receiving end of this: did you want to be told before or after a wedding? And did it change what you felt about the person who waited?