Panorama, Harmony or Informaseq testing

vanessaw78

I just searched the other posts and couldn't see that anyone asked this before, but I apologize if I missed it...
So my practice does not offer any of these (newer) genetic tests. Does anyone know of a better way then just googling them to find a location to get them done without switching practices? I emailed one of the companies and called another with little help from their representatives regarding not switching practices.
Thanks in advance!
I'm located in MA.

Emeraldeyed315

I believe those tests are really only offered to higher risk (mc history, age, etc)

vanessaw78

I am higher risk... My practice just doesn't offer them.

MCH77

Could you be refered to a high risk dr that does the tests?

vanessaw78

MCH77 said:

Could you be refered to a high risk dr that does the tests?

Good question... I have my next appt in two weeks so I'll ask. You would think they could just write the blood work order for another location that does any of these tests but I never thought to ask more after I was told they don't offer them...
I never did any genetic testing with my previous pregnancies and now that I'm considered high risk I would prefer these less-invasive, more accurate newer tests out there, you know?
I wouldn't change anything based on the results but I'm a planner and a lot more comfortable having all the info I possibly can.
I'll ask my midwife in a few weeks.
Thx

law&order

My MFM offers them, as does the fetal genetics center where all NT scans are performed for the entire hospital/medical group (it's a major medical research university/hospital). If you haven't had your NT scan yet, can you inquire? 

vanessaw78

law&order said:

My MFM offers them, as does the fetal genetics center where all NT scans are performed for the entire hospital/medical group (it's a major medical research university/hospital). If you haven't had your NT scan yet, can you inquire? 

My NT scan is in a few weeks at my current practice... Do you mean inquire at a different practice/hospital where they do offer them? I called one doctors office that Ariosa Diagnostics (the company that makes the Harmony test) gave me the contact info for here in MA but they said I need to be a patient of their practice. I don't want to switch practices just based on this test, you know?

law&order

vanessaw78 said:

My MFM offers them, as does the fetal genetics center where all NT scans are performed for the entire hospital/medical group (it's a major medical research university/hospital). If you haven't had your NT scan yet, can you inquire? 

My NT scan is in a few weeks at my current practice... Do you mean inquire at a different practice/hospital where they do offer them? I called one doctors office that Ariosa Diagnostics (the company that makes the Harmony test) gave me the contact info for here in MA but they said I need to be a patient of their practice. I don't want to switch practices just based on this test, you know?

Mine was at the same hospital and same practice (MFM). But anyone who goes to any doctor or midwife within the hospital system goes to this facility for the NT. So even if a midwife or family practitioner who has OB privileges doesn't offer the test, you can still get it through the genetic counselor/NT scan process. 

Mainly it depends on your insurance. If you have a PPO you could probably go visit another doc that offers the test. I guess I'm also wondering why your doctor couldn't order it for you if you're high risk. If you're high risk, maybe your doctor isn't right for you anyhow? 

ETA: your/you're problems

ceci8876

I wanted to share this report with you ladies. It really concerned me that so much is being placed on the unregulated screening tests. https://m.wgbhnews.org/?utm_referrer=http://m.wgbhnews.org/?utm_referrer=http%3A%2F%2Fwww.google.com#mobile/33209

Hopefully the link works. After hearing about I spoke to some friends. A good friend told me her screening came back that her son was at risk for Trisomy 18. She was devastated. Her son is fine! What really gets me is that some Boston doctors sent in samples from non pregnant women and got results back like, the baby is fine and it's a girl! These screening tests are marketed to doctors just like prescription drugs, but the oversight by the FDA isn't even at the same level.

I want to make sure my baby is healthy too, don't get me wrong. But I'm very hesitant with false postives. And I worry that practices may be putting too much emphasis on screenings.

shaley29

My OB referred me to the high risk office at our local hospital. They work with them all the time. Even though my OB deals with high risk also, this place offers more high tech tests and care

mrssnyder83

ceci8876 said:

I wanted to share this report with you ladies. It really concerned me that so much is being placed on the unregulated screening tests. https://m.wgbhnews.org/?utm_referrer=http://m.wgbhnews.org/?utm_referrer=http%3A%2F%2Fwww.google.com#mobile/33209

Hopefully the link works. After hearing about I spoke to some friends. A good friend told me her screening came back that her son was at risk for Trisomy 18. She was devastated. Her son is fine! What really gets me is that some Boston doctors sent in samples from non pregnant women and got results back like, the baby is fine and it's a girl! These screening tests are marketed to doctors just like prescription drugs, but the oversight by the FDA isn't even at the same level.

I want to make sure my baby is healthy too, don't get me wrong. But I'm very hesitant with false postives. And I worry that practices may be putting too much emphasis on screenings.

Same thing happened with my aunt. Her entire pregnancy they told her to abort because her baby had alllllll these problems. She was perfect when born. Now 17 year old & driving lol this is why my husband & I decided against it. We will love our baby no matter what's wrong. Neither of us have any major health problems & neither does our families.

charliepepper

mrssnyder83 said:

ceci8876 said:

I wanted to share this report with you ladies. It really concerned me that so much is being placed on the unregulated screening tests. https://m.wgbhnews.org/?utm_referrer=http://m.wgbhnews.org/?utm_referrer=http%3A%2F%2Fwww.google.com#mobile/33209

Hopefully the link works. After hearing about I spoke to some friends. A good friend told me her screening came back that her son was at risk for Trisomy 18. She was devastated. Her son is fine! What really gets me is that some Boston doctors sent in samples from non pregnant women and got results back like, the baby is fine and it's a girl! These screening tests are marketed to doctors just like prescription drugs, but the oversight by the FDA isn't even at the same level.

I want to make sure my baby is healthy too, don't get me wrong. But I'm very hesitant with false postives. And I worry that practices may be putting too much emphasis on screenings.

Same thing happened with my aunt. Her entire pregnancy they told her to abort because her baby had alllllll these problems. She was perfect when born. Now 17 year old & driving lol this is why my husband & I decided against it. We will love our baby no matter what's wrong. Neither of us have any major health problems & neither does our families.

Just wanted to clarify that both traditional first tri screening and cell free fetal DNA are screening tests. This means that they can not tell you if your child will have trisomies, it only tells you a risk value. Good screenings maximize false negative results (getting a low risk when you are high risk). In order to do so, sometimes they have to have some false positives (being told that you are high risk when you are actually low risk). It's the way screening tests are made, which makes sense--you want to catch as many possible positives that you can. That's why all high risk screenings should be followed up with a diagnostic test (ie amnio or CVS) in order to make a definitive decision or diagnosis.