Anyone decline genetic screening?

[Anonymous]

I just dont totally see the point of it. We are on track for IUI and honestly cant afford IVF, so I dont know what we would do with the information. The only course of action if something pops up on the genetic testing would by to do IVF and screen the embryos, right? We have one child already conceived naturally. Did anyone else skip the genetic screening? Am I crazy for skipping it?

[Anonymous]

Carrier screening is offered to women/couples who conceive naturally, too. The full Counsyl Foresight carrier screen tests for something like 176 genetic conditions between you and your partner. A subset of the conditions on the list that the Counsyl test covers have well-documented early intervention strategies, so that can be useful to expecting parents and their healthcare teams to be prepared for, if there is an increased chance the child could be born with whatever genetic condition. I think the decision really comes down to how much advance information/well-prepared couples may want to be, how risk-averse they are, etc.

[Anonymous]

Maybe see if you can find out if your insurance will cover it? Mine covered it 100% even though we pay 50% for fertility treatments.

My OB also offers genetic screening once you are pregnant, but it's just for cystic fibrosis I think. I did the Counsyl screening mentioned by the PP before my IUIs. It tested for a lot of different conditions, one of which I was a carrier for. Then they tested my husband. I did wonder, what are the odds really that he is a carrier for the exact same rare condition (he isn't)? It does seem like an unnecessary expense, but the nice thing about Counsyl at least is that they tell you if your insurance will cover it beforehand.

[Anonymous]

I wouldn't do it unless you're aware of any family members (including on your husbands side) that have some kind of genetic problem. I had to go through genetic counseling because when I did IVF I had my embryos PGS tested. I specifically asked my genetic counselor if she thought any of the genetic blood testing was necessary and she said no based on the fact that no one in my family or extended family nor my husband's have any known genetic defects. We're also not Jewish. The chance both you and your husband have the same genetic defect is extremely slim.

[Anonymous]

Well you could both be carriers of cystic fibrosis, or some other disease. Google cystic fibrosis and consider whether you’d want that.

[Anonymous]

We declined. I’m black so odds of cystic fibrosis very low. Not impossible as I know a couple who are both black and both carriers of cystic fibrosis. They were told it was extremely rare they both were carriers. Chances of us being carriers of something seemed slim and people largely get pregnant without having genetic screening prior to. Shady Grove really pushed for it but we said no. They really pushed for IUI when we wanted to do clomid cycle first. We just stuck to our guns and did what felt right for us.

[Anonymous]

Declined. Both my husband and I are mutts. Didn’t see the point.

[Anonymous]

I only did it because of CF in my family. Otherwise I wouldn’t have paid for it but would have done it if it was covered (it was, but I was doing the test before TTC, so it wasn’t tied to fertility treatments).

[Anonymous]

I would do it. These conditions are recessive so you don't see a family history. I have a friend who had a baby with SMA. No family history at all. And that one affects all ethnicities more or less equally. It's been devastating.

[Anonymous]

I did the testing and found out I'm a carrier of a terrible disease with a max life expectancy of 30 and most will die before that from various cancers associated with it. No history of this disease anywhere in my family tree.

This is how we still have these diseases today--because people don't know they are carriers. I'm so glad I had the testing done. DH is negative. But now I know to tell my kids that they will need to get tested once they are ready to have kids, even if they aren't afflicted with infertility.

I also had a neighbor growing up who had CF and died in her late 20s. No record of it in her family either. She was the third child. The first two didn't have CF. Was a complete surprise.

[Anonymous]

Anonymous wrote:I just dont totally see the point of it. We are on track for IUI and honestly cant afford IVF, so I dont know what we would do with the information. The only course of action if something pops up on the genetic testing would by to do IVF and screen the embryos, right? We have one child already conceived naturally. Did anyone else skip the genetic screening? Am I crazy for skipping it?

I don't think you're crazy for skipping it. Plenty of people have babies without getting genetic screening.

Is genetic screening totally worthless if you won't do IVF? No. It can help you to be prepared for the possibility that your child will have a serious condition, or for other issues. For example I found out I am a carrier for a rare condition, and even though my husband is not a carrier, the newborn screening can have false positives for this condition if the mother is a carrier. So that's good to know, if not essential. Definitely worth it if covered by insurance.

[Anonymous]

I'm definitely pro genetic screening for all couples considering having children. But I have had lots of experiences in genetic disease as I'll explain later. The question you have to ask is if you still would do an IUI if a genetic disease was possible, or if you'd just move on to adoption or just not have children. Of course, odds are you're probably just fine, but there is that chance. Your odds will be the same whether or not you test and living in genetic ignorance and crossing your fingers isn't going to diminish the risk that you and your partner could be carriers.

My husband actually has CF and is the only one in his extended family to have the disease. He's lived a healthy and happy life despite having this horrible disease. I made sure to have a thorough CF genetic screening prior to us doing IVF though. Whether or not a couple decides to still have children knowing that there's a very high chance of them having a child with a genetic disease is really up to their own personal beliefs. But that being said, I think it's important to be informed before making any decision. It also is medically beneficial to know about a risk of disease before hand for diagnosis and treatment.

Also, as the person above me posted, you can have false positives from newborn screenings due to being just a gene carrier. We had this happen with our daughter and metabolic disorder. Further testing showed she and I were just carriers, but we had one freaked out month waiting for results. If she were to had have that condition, it definitely would've been good to know before birth as it requires constant feedings to avoid fataly low blood surgars. We also found out after further genetic testing after that false positive that I'm a carrier for a pretty terrible neurodegenerative disease that thankfully my husband is also not a carrier for.

Insurance may cover it since covering a child w a disease would be $$. If not, your clinic may charge you a discounted price (my clinic years ago said they just needed $100 in payment and we'd just make up the difference from what insurance paid out). Also, something like 23 and Me can test for common gene mutations and greatly rule out the possibility of genetic disease (I think they test for the very common CF gene and even the metabolic disorder that I'm a carrier for).

[Anonymous]

If you dothe screen, they may not start a cycle until results come back. I had done the screen but my DH hadn’t and we opted to do it through another doc so we didn’t have to wait on the cycle. The Clinic we were at had a policy not to proceed with outstanding test results. With my screen and his health history, we weren’t expecting anything problematic, so I wasn’t worried.

The info can be useful for general health purposes. I found out that I carry one bad copy of a gene that can increase risk of blood clots somewhat. It explained a family member’s history of stroke and gave me some peace of mind that I probably won’t have one in my 40s like the family member, although I’ll still be careful.

[Anonymous]

We did carrier screening, but no other testing as I knew I would not abort.

[Anonymous]

Not sure if this is helpful, but Kaiser (Federal Health Plan) covered Counsyl fully for both my husband and myself.