Out of curiosity, who has chosen to have genetic testing related to their hearing loss? If you’ve been tested, what was the reason?
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I got tested last year because 1) I’ve been told by audiologists that my hearing loss might be genetic and 2) I keep reading about new therapies being developed for genetic causes of hearing loss. Unfortunately, my tests all came back normal.
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Around the time that I was seeing a geneticist for other reasons, I asked my ENT about genetic testing. She mentioned that some hearing loss is syndromic but most is not.
I was diagnosed with a mitochondrial disease by the geneticist through genetic testing. Hearing loss is associated with many mitochondrial diseases including mine although mitochondrial diseases are much more heterogenous in presentation than other genetic diseases.
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Ah, my cinderblocks are so obviously due to my family’s genetics that it was a NO-BRAINER. 
I get my sensorineuraly-challenged ears from father’s side. His dad passed along cinderblocks to my dad, who passed them along to me. Ironically (or maybe not) my mom had age-related hearing loss that she passed along to my sister - both in their mid-to-late 40s when they needed aids.
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I had genetic testing through the MORL lab in Iowa. They identified Myosin-6 mutation. It’s helpful info for my kids and grandkids going forward and helped inform how successful my cochlear implant (CI) might be based on studies of others with CIs and identified mutations.
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Have not been tested, but Alports Syndrome is possibly responsible for some folks hearing loss.
If anyone is interested in genetic testing but you want to save $1000’s of dollars this is what I found out.
My wife had breast cancer about 8 years ago. she had to get some genetic tests and that cost us about $5500. then I had high iron and I had to get genetic tests (hemochromatosis) for liver issues. another about $3500.
After all this I signed myself and my wife up on 23andme for their Health and ancestry service (their best package).
When we received our results, at first I just looked at everything, but after a while it dawned on me to check 23and me results against our flagrantly expensive hospital tests.
I was shocked (and sickened) to see that the results were exactly the same. IDENTICAL!
It cost me $5500 for having only a couple of genes tested for my wife and $3500 for a couple of genes for me!!!
What a scam.
24and me gave us genetic test results on literally hundreds of genes. They give you the results if they find you have the gene and if it is likely or highly likely or concerning , etc. And they still send me emails notifying me of updates when new genes are determined to be linked to health problems.
And it didn’t even cost $200 bucks.
I have results on hundreds of genes and here is a real kicker.
I mentioned this to every doctor and they all said the same thing. If I had the 23and me results they accept them. the hospitals accept them. They are recognized just the same as if they came from any medical lab. I found out The FDA even recognizes 23and me results.
Every gene the hospitals tested for me and my wife were also in the 23and me results, and they had the same information, the same probabilities and so on.
Here are a couple of pictures of a few of my own gene test notices. 23anddme goes into a lot of detail if you want to drill down on your results.
OH if you are interested then 23and me sometimes offers a discount on the Health and ancestry deal. right now it is only $148 but the offer expires on the 16th. but they have the offer a few times a year.
I think that this genetic testing is one of the smartest things you can do to help yourself based on my experiences and knowledge.
good for you and everyone in your family.
And there is a whole lot more. this is only a tiny bit of the info they give on just one of my genes.
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I haven’t had the test, but I have read that my hearing loss type is simplimatic of a genetic hearing loss, but it also is common with my military service of flying in and being around jet engines and aircraft without hearing protection. I am rated as being 50% disabled by the VA for my severe hearing loss, and the fact my word recognition scores are more in line with a profound loss. Now my word recognition has improved due to therapy sessions.
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If I was to be tested, some time down the line, I also envision that the piece of information that could be potentially useful is how much of my low frequency hearing is likely to be remain over time (my ski-slope is slowly moving to the left).
I do some DNA-geneology, so that’s one of the things that has made me think about genetic testing (I don’t think I would be too keen on finding out other potential genetic health issues, though).
Thanks for all the replies! I’m not really considering genetic testing at the moment, but as a scientist I must say I’m a bit curious as to what causes my hearing loss (no one else in my family has hearing loss). When I first was diagnosed with hearing loss twelve years ago my hearing at 2000 Hz was in the normal range and now it’s down to 65/70 dB, meaning that my ski-slope has moved quite a bit to the left. A genetic test might give some clues as to how this is going to develop over time.
This open-access paper nicely reviews causes of hearing loss:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6457651/
Genetics is a frequent cause but may involve one of a large set of genes, moreover some conspire with environmental factors (incomplete penetration). The nice thing about 23andMe is indeed that you get raw, reliable data for tens of thousands of SNPs (single nucleotide polymorphisms, those rs numbers). I am not sure the company software will flag all the risks, so you may need to do some homework here… What “helps” is that many are autosomally dominant (affecting a parent and every sibling).
My own handicap probably relates to a massive dose of ototoxic antibiotics I got as a toddler, six decades ago in a “Third World” country (today’s NGO euphemism is “Low- and middle-income country”). Not blaming anyone, as I had a pretty serious infection and am unsure about the alternatives.
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it’s funny really. we were looking at what is wrong with my mom so they had to test me first.
guess what? I have 6 genetic mutations. (one is the cause of my hearing loss which is HOMER2)
but get this: some of the mutations are from my mom and I know 2 that affects the heart is from my dad. 
Did you find out that there were certain genes related to hearing loss and if so would you please share with me which they are? I am a 23&me customer. thanks
You may find this 2022 open-access paper useful. It identifies 48 SNPs associated with hearing loss:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9247887/pdf/main.pdf
The rs-codes of these SNPs, and what variant is associated with the risk, are shown in Table 1.
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Hi this is from 23andme
The 23andMe PGS Carrier Status Test for Nonsyndromic Hearing Loss and Deafness, DFNB1 (GJB2- Related) is indicated for the detection of eight variants in the GJB2 gene
usually 23andme does not alert you to a gene unless you have a slightly increased, Increased or typical likelihood to develop a gene related illness. They also will mention “variant not detected” if the gene is not found but typically causes illness.
They did not inform me of any concerns about the DFNB1 gene so that is great for me. My hearing loss is partly age and decades of shooting, not genetic.
23andme only reports on genes that are recognized by the FDA as a concern. (but there are a lot of them!) The FDA adds genes periodically to their list so 23andme will update frequently and notify you if you have these newly approved genes. I have received notices for a bunch just in the last month.
Note that late-onset hearing loss may both have environmental and genetic components (e.g. you might have a higher susceptibility for loud sounds)- just to complicate things further…
The other thing is that geneticists usually refer to “variants” rather than “mutations” (except for major deletions and the like). Our genome is a compromise for whatever suited our ancestors best in their lifetime (remember that none of yours died childless), and quite often “disease” variants are beneficial in a different context. This happens mostly in immunology with, for instance, genes that cause allergies (sometimes deadly, think peanuts) have probably protected our ancestors from even deadlier pathogens in the past. Ditto for genes associated with fast/slow blood clotting, and “funny personalities”. Just to say, do not feel inferior for whatever 23andMe flags.
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