Should Family Members Be "screened" For T1d Genes?

[pinewood]

I'm the only one in my family with T1D but I have a younger brother and - after reading THIS article (from the reuptable BeyondType1 organisation) - feel slightly concerned at its statement that "If you have a relative with Type 1 diabetes, you may be at higher risk of developing the disease, making it imperative that you get screened".

I see that screening is available in the UK under the "TrialNet" programme (see here).

Have you had family members be screened? If anything, I suppose it could at least be reassuring in the event that a family member does not have the suspect genes in question. I do, however, feel that my relatives could be a bit alarmed by the suggestion they get screened.

 

[Juicyj]

This is something I disagree with - I don't believe in screening at all, why establish if someone has a pre-disposition to a medical condition which may occur in the next 1-100 years, it creates uncertainty, stress and worry and takes away the opportunity to live each day in the present. If you are already aware of type 1 and therefore aware of the symptoms of the condition then it can be treated at the point it is required.

I have thought about this as a parent and I really would not want to know if they are at risk as what could we do aside from worry if it were to develop some time in the future.

 

[Robinredbreast]

This is something I disagree with - I don't believe in screening at all, why establish if someone has a pre-disposition to a medical condition which may occur in the next 1-100 years, it creates uncertainty, stress and worry and takes away the opportunity to live each day in the present. If you are already aware of type 1 and therefore aware of the symptoms of the condition then it can be treated at the point it is required.

I have thought about this as a parent and I really would not want to know if they are at risk as what could we do aside from worry if it were to develop some time in the future.

Good point, I knew a family who could be at risk from Huntington's disease, the girls took the test, the guy didn't, he said he didn't want to know, what will be will be. Sometimes the worry and stress of wondering ................. can actually lead to medical conditions and a possible early death

 

[Colin of Kent]

I have to say I agree with Juicyj. A screening program could add unnecessary cost and responsibility to our already overstretched PCTs. If an individual develops type 1, there's not much benefit in forewarning them, in my view. If my parents and I had known in advance, it wouldn't have helped us at all. (I was diagnosed aged 10.)

 

[porl69]

I wouldn't want to know if my siblings were at risk in the future. Don't get me wrong I test them when they come to visit me BUT not every time I see them

 

[eventhorizon]

Me, my family and my brother's family are involved with the trialnet study. They are researching and hope to find the causes and one day a cure for type 1. Taking part will help everybody. If you don't want to know the results they won't tell you. My brother has been told he will get t1d at some point, maybe next month or in the next 50 years. He says he would rather know than not but it's a very personally choice. Additionally you may be invited to participate in prevention or delaying progression trials.
I would encourage everyone eligible to take part.

 

[Seacrow]

Screening is one thing, pretty much a personal choice as to whether you want to know. If the data is then being used for research, I'm all for it. It probably won't help you, or even your children, but it's worth doing. Where would we be without the t1 diabetics who volunteered to try the new drug, insulin?

 

[KK123]

Me, my family and my brother's family are involved with the trialnet study. They are researching and hope to find the causes and one day a cure for type 1. Taking part will help everybody. If you don't want to know the results they won't tell you. My brother has been told he will get t1d at some point, maybe next month or in the next 50 years. He says he would rather know than not but it's a very personally choice. Additionally you may be invited to participate in prevention or delaying progression trials.
I would encourage everyone eligible to take part.

I did not know that they could do a 'test' that would tell someone they 'will get type 1'? for definite as opposed to a percentage chance etc. . That has come as a complete surprise to me and makes me want to get my 3 (adult) kids tested. I won't though because it would cause too much stress. Do you know when the results of this study will come to fruition as it sort of debunks the 'theory' that type 1 may come about as a result of a virus or something. I am assuming they told your brother this based on genetics?

 

[evilclive]

Where would we be without the t1 diabetics who volunteered to try the new drug, insulin?

Given they were on their way to a guaranteed early death, those volunteers didn't have too much to lose

 

[Deleted Account]

My understanding is the screening can determine whether you will get type 1 (at some point in the future ... unless you die of something else first) but I don't believe it can determine that you will NOT get type 1.

Apart from me, no one in my family has diabetes of any type and the is no knowledge of it either my Mum's or Dad's family. However, my 76 year old mother takes great delight in providing a positive answer to the question "does anyone else in your family have diabetes?"

 

[eventhorizon]

I did not know that they could do a 'test' that would tell someone they 'will get type 1'? for definite as opposed to a percentage chance etc. . That has come as a complete surprise to me and makes me want to get my 3 (adult) kids tested. I won't though because it would cause too much stress. Do you know when the results of this study will come to fruition as it sort of debunks the 'theory' that type 1 may come about as a result of a virus or something. I am assuming they told your brother this based on genetics?

Trailnet found 3 antibodies in my brothers blood. They said he had a less than 1% chance of not getting t1d. I think by some criteria he already has t1d although shows no symptoms. I've had T1 for 20 years he's had the antibodies for 5 years. It's seems that getting t1d is actually a long process. Thankfully my daughter nor my brother's 3 children show any antibodies, but still contribute to the trial every year.

 

[eventhorizon]

I have to say I agree with Juicyj. A screening program could add unnecessary cost and responsibility to our already overstretched PCTs. If an individual develops type 1, there's not much benefit in forewarning them, in my view. If my parents and I had known in advance, it wouldn't have helped us at all. (I was diagnosed aged 10.)

It's not screening. It's a research project carried out by an American company I think. You getting your chances of developing diabetes is a by product of their research.

 

[pinewood]

It's seems that getting t1d is actually a long process.

Then how do some babies get it? Sorry, not being rude, just genuinely curious.

 

[eventhorizon]

Then how do some babies get it? Sorry, not being rude, just genuinely curious.

No idea and a good question. Incidentally trialnet wouldn't look at my daughter until she was 3 years olds.

 

[EllieM]

I thought they'd done studies which showed that when an identical twin developed T1 his/her sibling had a 50% chance of also getting it? So even with "T1 genes", you don't necessarily come down with the illness. But I guess having the antibodies means that you've already got it????

 

[dancer]

I was diagnosed with coeliac disease over 2 years ago. I was told my adult children and siblings should be tested, especially if they have any symptoms (the one symptom I was told I had hasn't changed since going gluten free, just before official diagnosis). My children basically said they didn't want to know, but would get tested if they had symptoms. My siblings haven't been tested either.

I wouldn't suggest them being tested for Type 1 as they know what the symptoms are, so there's no point in possibly worrying needlessly over a positive result which might not come to anything.

 

[Indy51]

There is no single gene that specifies that someone will 100% get any autoimmune condition. It just doesn't work that way. It's a risk factor but not a guarantee.

Autoimmune disease = genetic predisposition + environmental trigger + intestinal permeability. If any one of these 3 factors is absent, no disease is triggered that is why onset can be separated by many years in any one individual.

Autoimmune disease is not the same as autosomal diseases like Huntington's.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4874193/

 

[Dark Horse]

I'm the only one in my family with T1D but I have a younger brother and - after reading THIS article (from the reuptable BeyondType1 organisation) - feel slightly concerned at its statement that "If you have a relative with Type 1 diabetes, you may be at higher risk of developing the disease, making it imperative that you get screened".

I see that screening is available in the UK under the "TrialNet" programme (see here).

Have you had family members be screened? If anything, I suppose it could at least be reassuring in the event that a family member does not have the suspect genes in question. I do, however, feel that my relatives could be a bit alarmed by the suggestion they get screened.

The TrialNet test seems to be looking for antibodies, not genes. In other words, they are looking for markers that someone has already developed an auto-immunity and is part way down the road to type 1. Presumably there is nothing to stop someone who tested negative from developing auto-immunity later. https://beyondtype1.org/type-1-diabetes-trialnet/