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mamashark

tell me why I should...dna test

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Ancestry is running a sale on their DNA testing for $60, and so now researching the benefits of this is relevant from a financial argument... But, I'm trying to figure out if it's worth running two tests (one for my son with ASD and one for my daughter with Dyslexia/other unanswered questions regarding health). 

Here's what I can't wrap my head around - how do I get actionable information from this? 

Getting a report that says, oh look, she has this mutation that means dyslexia helps me zilch. I can SEE that already. Will I be able to figure out something that I can actually use? 

I know this has been discussed on the boards before but either my computer is acting up or I'm in need of another cup of coffee (or perhaps a cup less than I've already had??) but I can't get the search function to bring up any relevant results.

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Ancestry's test isn't best for health information, 23andMe would be a better choice (you can do their less expensive Ancestry Service rather than the more expensive Health and Ancestry; the actual DNA data you receive is identical and their health interpretation is still quite limited; you will likely want to run their data through a third party interpreter either way).

Most health issues are complicated and not controlled by a single gene, and the genetic science to know what is causing what is still being developed; lots of different genes interacting and impacted by epigenetic modifications may be behind the issues you are seeing in your children. You may be able to learn something actionable; mutations affecting metabolic pathways, vitamin usage, neurotransmitter synthesis, etc. I find such things useful when looking at complex health issues as they give me a route to investigate and ideas of things to try in terms of supplements. I haven't found any silver bullet solutions; as I said, the science just isn't there at this point.

If you can wait a few months better sales will likely show up later in the year--there were good Black Friday sales last year from most of the genetic testing companies, including a couple that do much more comprehensive (whole genome) testing. 

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ok sounds like waiting until Black Friday for a better sale on 23andMe might be better 🙂

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We haven't done this yet either. Can I tag on and ask a follow up question?

How do you take one of these tests while maintaining anonymity?

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Yup, I would use 23andme. I haven't use ancestry, but everything online is saying they're stronger on genealogy. Usually, when I look up things I read about in studies, they're in our raw data from 23andme. So with the $69 sale price frequently run at 23andme, I don't see a reason to use something else. 

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38 minutes ago, mamashark said:

ok sounds like waiting until Black Friday for a better sale on 23andMe might be better 🙂

Why would you wait? They're probably already on sale for mother's day, go see. Besides, if I had realized how much valuable, actionable information I was going to get (well actionable in the sense of if you're willing to spend tons of time figuring out what to do with it, haha), the extra $20 or whatever would have been a nothing. I think I paid $79. You'd be waiting 6 months for information to save $20. 

Remember, there's still a lag from when you buy to send off to receive results. I'd just get a move on it.

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2 hours ago, mamashark said:

Will I be able to figure out something that I can actually use?

Ok, not to be too obvious, but it's easiest to find a use for the information if there is a use. The testing radically changed how we handle ds' mental health symptoms, because we could see the exact chemicals and enzymes involved and target them. Dyslexia, you already know the intervention and the diagnosis, so I don't see what changes. 

I downloaded the raw data, ran it through promothease, downloaded THAT file (which will then open in your browser whenever you want) and spent a lot of time reading through it. So it might be a whizbang fast, wow found something, or it might be a slow connecting of dots. Sometimes we find dots and are like ok but I don't know what to DO with this. 

Some of the things we found with genetics were really basic, easily treatable things that made his life better and his moods more stable, like vitamin D receptor gene issue. Good luck getting bloodwork on my ds, lol. Easier just to say boom, let's try that, and see what happens. I would have done blood to establish a baseline, but he wasn't having it. Sigh. Which reminds me, are we scheduled to go to the ped? I forget.

So I think usefulness depends on whether having that information would change how you treat the problem you're dealing with. Remember, it's ok to start with one kid. My kids are like 50% similar, so you're able to make some immediate guesses based on that, once you have the genetics of the other. Now we had some curveballs where my kids are DIFFERENT. My dd has an MTHFR defect (that she had figured out because it was giving her symptoms) and my ds doesn't, go figure. And that was a BIG DEAL to her finally to get that identified. And it was a big deal for me because I didn't realize *I* had it. 

So if you're not sure, start with one, kwim? I would start with the dc who has the symptoms you most need help with, the one where you're lacking answers or options that work.

Edited by PeterPan

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18 minutes ago, PeterPan said:

Why would you wait? They're probably already on sale for mother's day, go see. Besides, if I had realized how much valuable, actionable information I was going to get (well actionable in the sense of if you're willing to spend tons of time figuring out what to do with it, haha), the extra $20 or whatever would have been a nothing. I think I paid $79. You'd be waiting 6 months for information to save $20. 

Remember, there's still a lag from when you buy to send off to receive results. I'd just get a move on it.

23andMe's Ancestry Service is currently $99; I've seen it below $60 and you may not have to wait until Black Friday for a sale--sales happen frequently; the kits are also sold through Amazon and are often on sale for Prime Day in July. I don't think it hurts to wait for a sale if money is right.

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1 hour ago, Storygirl said:

We haven't done this yet either. Can I tag on and ask a follow up question?

How do you take one of these tests while maintaining anonymity?

You can use a pseudonym when registering the test kit and you don't have to make your information public or available to potential matches.

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1 hour ago, Storygirl said:

We haven't done this yet either. Can I tag on and ask a follow up question?

How do you take one of these tests while maintaining anonymity?

Supposedly Maximized Genetics is better for privacy as they don't sell data to Big Pharma. I still haven't done it as I'm dubious about any genetic testing except through a doctor/research organization legally required by the GINA law to keep the information private.

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I started to sign up for the Autism Spark thing but then I got cold feet over privacy concerns.  I think it seems like a great program but I decided not to do the samples for my kids while they are too young to decide if they want to do it or not.  I think it was going to be my son with autism plus one sibling.  Edit:  it’s weird of me because I don’t hesitate to make other health-related decisions on their behalf.  

There’s a chance insurance would pay for us and let us see a genetic counselor and all that.  I just do not think my son has a genetic syndrome.  

I know a family that has been incredibly helped by finding out about a genetic syndrome, though.  They go travel for a specialty clinic and it seems like a really, really good deal for them.  

I still don’t know what I think about the whole issue of my other kids and discovering some genetic issue that might make them choose not to have biological children.  I would be happy to have adopted or step grandchildren, but it is still just something I am not ready for.

I wouldn’t expect actionable information for my kids right now, I guess.  

Also my kids do not have any allergies (beyond seasonal) and do not have any health concerns.  

For health concerns I tend to think I would do it, because that seems like it does really help people.  

Edit: for whatever reason neither of my sons take any medicine or are recommended any medicine.  I don’t know enough about it to know if I would do it to find out about medication responses.  

Edited by Lecka

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I have had a lot of DNA screening for cancer  and metabolism of certain perscriptions . I have heard there is one that can help with understanding depression and anxiety medications. What I am considering researching is the MTHFR gene ( folic acid and B12 issues) and the different genes that can cause that dysfunction. For myself I am also interested in the Cardiovasculer and insulin resistance genes.  I have considered running the 23 and me for myself and for my husband because of our health issues. Also both of us are already compromised on medical diagnosis because of existing health conditions so it wouldn't put my child name directly in the database. That being said I am pretty sure that they can track all of this stuff with their huge database. So I am likely not protecting their privacy if I run 23 and me on both parents. Privacy and medical choices are difficult to grapple with as parents.  Both of my kiddos have some health issues that concern me.  Its definitely on my radar for the future. 

Edited by exercise_guru
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I do also feel like I might throw some kind of bomb into my family if we turn out to have some kind of autism gene.  My nieces are older and it would probably effect them before my kids.  I just don’t think it’s something I want to get into.  

It’s hard to explain, but there are mostly only girls on my side, I am one of 3 sisters and my sister has 2 daughters.  I have 2 sons and 1 first cousin — for the boys it is 2/3 with an autism diagnosis.

Whatever the genetics are, it is a known thing that 2/3 boys have autism, but I don’t think my sister or nieces think anything of it.  

I think my older son might not choose to have biological children because he remembers how things were when my younger son was younger. My daughter seems not to remember it at all.  I don’t know.  

My older son helped a lot with my younger son when he was younger, he used to be the only one who could calm him sometimes.  I don’t think it has been a good thing, which makes me so sad.  But things have been going great here for several years at this point.  

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Our family has participated in SPARK and also Simons Variations in Individuals Project. SPARK didn't provide any results to us and we sent the blood samples in several years ago. Simons VIP has reported results but to even be included in that research project at all there has to be a previously identified gene mutation or chromosomal microarray result.

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We did SPARK and they don't give back any raw genetic data. Or at least I haven't gotten any. I have however gotten good money by filling out several surveys. I usually get $50 a pop for 15 minutes of my time. I personally don't care a lot (yet) about the privacy issue. I just figure there's tons of data out there and I don't care. 

4 hours ago, exercise_guru said:

the MTHFR gene ( folic acid and B12 issues)

Super easy to do with 23andme. Just run your raw data from there through www.knowyourgenetics.com and it will crank out fancy charts with everything you never wanted to know. And yes, it's super useful info.

3 hours ago, Lecka said:

I do also feel like I might throw some kind of bomb into my family if we turn out to have some kind of autism gene.

There are 83 genes implicated at least, in addition to de novo mutations. So unless it was de novo, I would expect a gene to show up in the tree, yes. And really, they aren't that striking even. The same gene will be hitting for ASD, schizophrenia, bipolar, apraxia, all sorts of stuff. It's not actually that interesting what you find, unless it's de novo. It's more like oh look, 13 genes that all lean that way.

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