Never did dor yeshorim. Do it now??

amother

Gold

Wed, Jan 31 2018, 6:31 pm

My husband and I didn't do genetic testing before marriage. I was either not aware, or it slipped my mind, and nobody ever advised either of us about it.

Now that we've already been married and have a number of kids, bli ayin hara, should we do it? It's kind of ... I don't know how to word it.

The thought came up because we are going through some testing because of one of the kids' hearing problem (ftr, if I understand correctly, incidentally this is something for yeshorim doesn't even test for).

Your thoughts? Especially if you got married without being tested and thought about it after the marriage.

oliveoil

Wed, Jan 31 2018, 6:39 pm

If you decide to test now, definitely not need to go the dor yeshorim route. Do proper testing where you will know what you do and don't carry.

singleagain

Wed, Jan 31 2018, 6:40 pm

I would not do dor yrsharim, bc they don't tell you anything and tlat this point I get the impression that you want to know.

there are other genetic testing companies you can look into.

You might even be covered for genetic testing under your insurance. Check your policy and talk to your gp.

Also consider, in what way would your life change based on the results.

amother

Papaya

Wed, Jan 31 2018, 6:45 pm

If you want testing now I wouldn't bother with dor yesharim... It's my understanding that they don't test for many diseases and the whole anonymous aspect is so that people's shidduch prospects aren't tainted by whatever genes they carry. I used jscreen.org after I was married but before kids -- They test for many more conditions and it includes genetic counseling so you can understand your results and options. If you want something more comprehensive, consider 23 and me or something like that.

amother

Gold

Wed, Jan 31 2018, 6:52 pm

singleagain wrote:

So that's the point, I'm not excited about getting tested, unless we have to. After all, we never got checked for those dreaded diseases, so maybe we really must do it?
But I'm not excited about the prospective of ch'v finding out something awful and results of testing having repercussions on the way future children (if any, iyh) would have to come into this world.

I don't have a normal gp to talk to. Maybe I'll ask the rav I usually call and he can ask r. Reuven. Anybody knows how he holds in this area?

singleagain

Wed, Jan 31 2018, 6:57 pm

amother wrote:

Do you have any family history, that you are worried?

If not, it's maybe not such a big deal. If yes. Talk to a genetic counselor about options.

Then ask your Rabbi

amother

Puce

Wed, Jan 31 2018, 6:59 pm

If you plan on having more children I would test. Just in case there is something you can reduce the risk. There are things you can do to prevent children from those diseases

amother

Gold

Wed, Jan 31 2018, 7:06 pm

singleagain wrote:

Do you have any family history, that you are worried?

If not, it's maybe not such a big deal. If yes. Talk to a genetic counselor about options.

Then ask your Rabbi

No family history.

One kid has hearing impairment, just got her genetic testing results back, and geneticist advised that we get tested to see if hers was hereditary or spontaneous, and find out possible effects or lack thereof on other children and their future offspring.

This is nerve wrecking and sent my head spinning further, into thoughts of other issues that we never got tested for.

amother

Gold

Wed, Jan 31 2018, 7:07 pm

amother wrote:

If you plan on having more children I would test. Just in case there is something you can reduce the risk. There are things you can do to prevent children from those diseases

Like what? Ivf?

singleagain

Wed, Jan 31 2018, 7:08 pm

amother wrote:

Perhaps go just for the hearing test. See how that goes. And talk to the counselor more.

tichellady

Wed, Jan 31 2018, 7:10 pm

I recommend j screen for generic testing. I did if after getting married. I like knowing these things, so can’t really relate to why you would prefer not to know, but maybe it’s more of a personality thing.

amother

Gold

Wed, Jan 31 2018, 7:15 pm

singleagain wrote:

Perhaps go just for the hearing test. See how that goes. And talk to the counselor more.

Singleagain, thank you for chizuk!

I guess I confused you Smile

They want to test our genes to see source of hearing loss; not do a hearing test.
(well, hearing tests for everyone eventually, if problems do show up in our genetic test).

penguin

Wed, Jan 31 2018, 7:16 pm

AFAIUI, Dor Yeshorim will not consider testing married or even engaged couples, that's part of their policy.

You can hear some interesting (and varying) perspectives discussed by David Lichtenstein with various Rabbonim, available for download here.

If you found that either of you were carriers for something, you'd have to decide at that point if you want to do PGD.

amother

Gold

Wed, Jan 31 2018, 7:17 pm

tichellady wrote:

Maybe because ignorance is bliss.
I have these freaky scenarios in my head, like discovering something awful and never having more kids.

singleagain

Wed, Jan 31 2018, 7:17 pm

amother wrote:

Singleagain, thank you for chizuk!

I guess I confused you Smile

They want to test our genes to see source of hearing loss; not do a hearing test.
(well, hearing tests for everyone eventually, if problems do show up in our genetic test).

You're welcome. And I just didn't type right. I meant the test to see if the hearing loss is genetic .. it's just one test as opposed to EVERYTHING they can test for.

It sounds like taking baby steps might be more your personality

amother

Pumpkin

Wed, Jan 31 2018, 7:25 pm

Connexin 26 is a recessive gene that often causes hearing impairment in ashkenazi children. I do not think Dor Yeshorim tests for it. Both parents need to be carriers. You did not specify which gene mutation was found. If it is connexin 26 or 30-it would be worthwhile to go to a geneticist and look into possible gene therapy for future pregnancies.

Blessing1

Wed, Jan 31 2018, 7:31 pm

For yeshorim doesn't give you any results/info. Before an engagement you call them & just ask them if the the couple is compatible. They just give you a yes/no answer.

amother

Blue

Wed, Jan 31 2018, 7:44 pm

Quote:

Connexin 26 is a recessive gene that often causes hearing impairment in ashkenazi children. I do not think Dor Yeshorim tests for it.

I know they do additional testing that includes at least some of the hearing impairment genes, upon request.

Usually this is done because there's a relative known to have the disease and so aunts and uncles of the affected child will then be tested (maybe even privately so they can get results). If the parents find out they're not carriers, they can proceed with life. If one of them is, then when their child is dating they can request the additional test.

And it's often done after things are moving along, at least in some circles, because they don't want to tell the other side every time about the need for further testing unless it becomes relevant.

(I know about such an incident having been the shadchan and they didn't mind my knowing this.)

Mommyg8

Wed, Jan 31 2018, 7:50 pm

amother wrote:

Like what? Ivf?

That's what I heard. IVF.

I think it makes sense to do the genetic testing for whatever recessive problems they think you might have, not so much sense to test for everything, I don't see the point.

Are you open to speaking to a Rav about this? Even if you are not looking for a psak, some Rabbanim have a lot of experience in these areas, and can give you better guidance. This would be risk free because you don't have to follow whatever they say if it's not a psak, but I do think it's a good idea to talk this over with someone who knows the implications of testing or not testing.