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Do you think it would be beneficial if at-home DNA tests (23andMe, Ancestry DNA, etc.) were able to assess a person’s risk of developing T1D?
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went through this & found it rather interesting, taking history into account & how diabetes was labelled many years ago, there is definitely a shortfall of information with death certificates.
These DNA tests all have me concerned about the privacy of your data. If that concern went away, I’d answer yes.
Assuming you want that information and those genetic markers have been defined accurately – certainly that would be helpful. I’m going through this process now but decided against 23andme, ancestrydna, etc companies due to the fact their popular tests are not full genome/exome and you don’t necessarily own your data or control it. I went with another company after researching extensively how I accessed/controlled the data and paid bit more for the full data set to upload it where I see fit for the reports I want and will be available in the future as more genetic research is always coming out.
What company did you use?
I’m not sure. What does a person do with the information? Is there any means of prevention? I think the information would be useful if there were some way of correcting the genetic factor, or preventing the risk factor. Otherwise, it’s information to add unnecessary stress. Then, there’s the issue about security of private information.
I think it will cause more harm than good. Look at what has happen with trying to get Life Insurance & they find out through one of these test that you have a slight increase risk of cancer. Your rate is increased or you are denied.
I simply do not know. I fear people might use it in place of diagnosis. However, I understand that if used properly it could be boom to trialnet and early detection
I do have the privacy concerns (but I didn’t have kids, and just an older brother who decided against the anti-bodies test when I was Dx’d). But I also would want to know if my children had the possibility. I would start them early on helping me manage so it wasn’t as scary and there are things being researched that apply within the first year or so of Dx.
I just said other, because It really doesn’t matter to me. Truth be told I really don’t want to know. Why worry about something especially if it never happens.
I selected other. I think you would have to opt to know, not automatic and who knows how accurate these companies are with their processes and procedures. But one day soon, people are going to know exactly what diseases they will and won’t get, and yes, that’s going to be very stressful. I know 2 young girls whose father died of stomachs cancer. They were told they were definitely going to it and one found out breast cancer too. They started cutting out their body parts: breast, stomach bypass, etc. I’m not sure there are any winners there.
I have no clue what I am saying Yes or No to, but another factor that isn’t presented is the cost. If it is pricey and not covered by insurance, most would opt out of doing such a test. My 2 sons were in the DCCT testing back in the early 90s to predict their propensity for T1D, but to do all this , it was a lot of travel and cost, not to mention the trauma for our 2 little boys. We even had a flat tired trying to get to the hospital which was 3 hours away. The boys missed school and their T1D Dad missed work. I wouldn’t do it again because it did not stave off the onset for 1 of our sons. The other is still OK.
I think the value is in knowing there is something to keep an eye on.
I did 23andMe. They are VERY clear that anything that is revealed is NOT to be used as a diagnosis and that any concerns or symptoms need to be taken to a doctor.
As a for instance in how it helped me, I tested as having a genetic marker for celiac disease. If I have stomach issues, I will know to ask my doctor if they think testing me for celiac is a good idea since I have a genetic marker for it.
While testing for diabetes isn’t as “needle in a needlestack” testing for something as vague as stomach pain, I think some people would benefit.
And, also, I can always ignore what is found! No one is pressuring me to react to what they find.
As for the privacy issues… well, I can’t relieve that fear… but, they have systems in place… and, I have decided to trust those systems. Don’t know if that’s a “more fool me” moment or not…
Those are my thoughts!
KarenM6 is correct. Results cannot be used as diagnosis. Speak to a doctor about concerns.
I believe that some of these companies maybe accurate or not. so what do you believe.but if doctors did it through your insurance it would more believable.
I think being notified with the dna results that there is a genetic marker for T1d, might be helpful. However, verbiage should be added that just because the genetic markers are there that without an autoimmune event that triggers yours body into destroying beta cells, no T1 will be induced. For instance, when diagnosing rheumatoid arthritis, just the RH factor is blood is not enough for a dx, it requires symptoms to appear alongside, as well as those that do not have increased RH factor, but still have the active signs and symptoms of disease. If they did notify those that donated dna sample of risk of t1d, I would suggest a specialized zoom or video call with a specialist to explain that genetic markers only establish risk, not diagnosis and to be aware of the signs and symptoms of actual disease, so treatment could be established when the symptoms appear, and no worry to be taken until then. As far as I know, many CDEs have this knowledge, but I would hate an uneducated doctor to scare someone to death over a genetic marker !
For identity security reasons, as long as the DNA test kit did not leave my home and the results were available without sending the kit somewhere, I would be encouraged to use it to identify potential chronic disease risks. This is especially true for those who do not or cannot determine family medical history.
Hopefully the research on T!D reversal for most types comes through. If this happens it would be very beneficial to patients if not treated and government in general. I have no idea what an insurance company would feel: do I want more or less possibly fatal diseases. More are being discovered but you need to take…