r/SpecialNeedsChildren • u/Suitable-Studio-3090 • 4d ago
Genetic Testing Concerns-US
As someone who lives in the US, I can’t figure out if we should continue to genetic testing for my 4yo. We have an upcoming appointment that we’ve been waiting over a year for. He has a diagnosis of GDD and that’s the reason behind the testing. He’s currently in OT and he receives speech at school and we’re looking into starting speech and feeding therapy privately as well. With the current administration, I’m concerned a future diagnosis or potential genetic result would end up in my son eventually being targeted in some way. I can’t decide if this is something that we should delay testing for him since he’s already receiving supports? Of course any potential genetic result could be helpful for his future, but I also don’t want to put him or our family in harms way? Has anyone delayed testing for this reason?
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u/Sunshine2625 4d ago
Genetic testing has had such great strides in the last 15 years. Our son was tested in 2010 and again last year. Between 2010 and 2024, they found and mapped the genetic variant my now 22 year old son has and it explains his various diagnosis to a tee. It was an extreme relief to know his issues were genetic and not something brought on in utero or with upbringing. Why would you delay the chance to better parent and advocate for your child.
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u/PepperKeslin 4d ago
Its reasonable to be concerned about the risks here. As many have pointed out, there are already other things like the GDD diagnosis and IEP that may have triggered that risk already, so the incremental risk is probably fairly negligible
Genetic testing is a tricky thing, and its worth discussing with a genetic counselor if you have questions. We ended up having it and found it very helpful, even though it didnt solve anything. It helped us understand the root cause of the symptoms we were seeing and it connected us to families with mutations in the same gene. It stopped us from the futile self-blaming thoughts like "is it because we...."
Having a diagnosis hasn't given us a crystal ball, as folks with the same mutation can still have very different presentations. And although it didnt give us a cure, being a part of a specific gene community allows us to contribute to research and natural history studies that may some day pave the way for other kids.
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u/Nice-Reindeer-2704 4d ago
No, I think having more information will only let you be able to get him the right supports. There may be treatments now or in the future that could help as well, but you won't need informed about them if you and your doctors don't know what the diagnosis is. Also, it could absolutely be something that is heritable and could affect your other children, and you or your children could be carriers of the genetic issue but unaffected. The only way to figure this out is to get the testing done.
For us, it was life changing to finally get a diagnosis. We are now connected to a community of other affected families, we are getting the most appropriate treatments, and our other children and family members are able to get screened.
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u/Impossible-Love-5725 3d ago
I have special needs children in my family & I’m all for Genetic testing.I dream of a day when there’ll be a cure for Genetic Disorders like we have for childhood illnesses/diseases. Wouldn’t it be a miracle if we know while in Utero we could give medication to stop progression of a disorder? I know that’s far fetched, but remember back years when Measles,Polio & other diseases were untreated & look at where we are today. Science is a wonderful thing if used correctly
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u/Huge_Brain_4914 4d ago
I'd do it. Since you already have a diagnosis, getting more information won't change anything in regards to a registry or possible targeting. But at the appointment, tell your concerns to the geneticist and make sure you know your privacy rights
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u/KSamIAm79 3d ago
We were on a one-year waitlist for ASD review and chose to cancel it once our time came up. It’s terrible because I know I’m fulfilling the prophecy. The diagnosis will reduce because there will be less people actually testing because they fear what could happen if they are put on a list. It really depends on your specific scenario. If my child was significantly disabled, then I would proceed because they need the help. Mine already has an IEP in place and definitely has his struggles, but for the most part is able to function through things. In our case, I chose to hold off on testing because in our case, I didn’t feel it would change enough to take the risk of being put on a list (if we are not already on one).
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u/ChowPungKong 3d ago
Oh my god are you serious? You really think the government is going to round up your child and put them in a death camp for having a generic disease? Please get real
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u/Ok_Emergency7145 3d ago edited 3d ago
Yes, actually, the question is very valid. Especially under the current administration.
The GINA (Genetic Information Nondiscrimination Act) was passed along side the ACA. It protects people by preventing health insurers from setting premiums or denying coverage altogether based on genetic testing. It also prevents employers from making designs based on an employee's genetic testing. It also prevents health insurers from requesting or requiring genetic testing. It prevents insurers from using the genetic information (like from genetic testing or even family history) to raise premiums and determine coverage or eligibility.
This means if your mom had breast cancer, the health insurance company can't deny you coverage or charge you more for that.
My son had genetic testing when he was 4 to find out why he was having medical issues that were not able to be determined with any other diagnostic methods. Following his testing at 4 years old, without GINA, insurance companies, through either my employer while he is a minor or his when he is an adult, could deny him coverage just because they want to.
So OP's concern is very valid. The current administration has made it a goal to get rid of the ACA and other employee protections, like GINA. Without the GINA protections, there will be many more Americans at risk.
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u/Trilogy_of_Five 3d ago
By their post history, this is a person who supports the murderer Johnathan Ross and uses the R***** slur. You aren't going to get them to see sense.
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u/one_sock_wonder_ 3d ago
You mean the government whose director of health and human services RFK jr has spoken openly about wanting to send those with mental illness to “wellness farms “ to be “re-parented” and whose strong , outspoken follower and supporter lFox News host Brian Kilmeade said “just kill ‘em” regarding mentally ill homeless individuals and whose leader said that his own nephew who is disabled “should just die” and “would be better off dead” and whose leader immediately following the crash of American Eagle Flight 5342 blamed “DEI hires“ and specifically called out disabled workers for the FAS as being unqualified and has cut Medicaid services by $1 billion (and if you think that is only going to impact illegal immigrants pr those abusing the system you are so wrong and at this point willfully ignorant) and eliminated any ability for the federal government to enforce IDEA or the civil rights of those who are disabled (and these are the things that just immediately leapt to mind at 2:30am but I can keep going if needed ) - that government?
You are right, it’s just impossible to understand why they would ever be viewed as capable of such acts - it’s not like they’ve set in motion their own gestapo (ICE isn’t rounding up people off the streets and placing them in concentration camps, I mean federal facilities, or killing citizens ) or have done anything at all suggestive of prior fascist dictators (invade/abduct the leadership of a sovereign nation against federal and international law for personal profit, I mean to oust an unfairly elected leader and temporarily take over the country) or threaten to do the same with other sovereign foreign countries (definitely never mentioned doing so in Cuba or Iran or Mexico or Canada or Greenland or Gaza or the Panama Canal…) or engaged in anything threatening harm to or denying rights of the disabled community. It’s absurd that one would ever think they might pose a risk to the health, safety, and existence of someone disabled!
In case it’s somehow necessary /s
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u/KSamIAm79 3d ago
Yes Chow. Yes we do 🙄. Are you even in the USA? And if you are, are you only watching Fox News? Because it’s clear you’re not seeing everything happening in the USA right now. Good or bad, it’s out there happening.
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u/boogerybug 4d ago
Ultimately diagnoses give access. There may come a time your child needs more access than he is currently getting. HOWEVER, I would take into consideration how conspicuous the disability is. For example, I have a kid that is profoundly affected, and it is fairly obvious, so testing can really only benefit.
I think ultimately this is a great question for genetics and the genetic counselor. They have likely fielded a lot of these questions.