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NOW CLOSED Take part in a survey about genetic testing for The Wellcome Trust

(52 Posts)
TheOtherHelenMumsnet (MNHQ) Thu 30-May-13 15:43:27

We've been asked by the Wellcome Trust Sanger Institute to ask Mumsnetters to fill in a survey they're running on genetic testing.

Here's what they say about the survey: "Your genes can tell you about your past, present and future medical health. Very soon, full genome testing (the ability to look at all 20,000+ genes) will be available in the health service. Like Angelina Jolie, you could have a genetic test and find out what you are at risk from. What would you want to know? Alzheimers? Cancer? Mental health issues? Or maybe you'd rather not know? Our research from Cambridge (www.genomethics.org) will have a direct impact on the way this testing is offered, find out about the possibilities and the ethical issues raised by this (no prior knowledge about genetics needed)."

The survey is open to to everyone so please take part and pass on to any friends/family you think might be interested.

Please click here to take part.

Many thanks,
MNHQ

zombie31 Fri 28-Jun-13 06:20:16

done

Witt Fri 28-Jun-13 08:57:24

Done. Really interesting and definitely got me thinking. Would definitely do it again in a few months.

ginpig Fri 05-Jul-13 14:40:54

I work on similar but much smaller scale projects and often have to consent people for this kind of testing- ethically, it's a very grey area and I eagerly await the results of this survey.

And for the person who asked above- DDD is Deciphering developmental disorders- a massive project that will hopefully provide many families with inexplicably sick children why they are so- it's a very well run study and is going to be a 'very big deal' when the results are published.

LastTangoInDevonshire Fri 05-Jul-13 19:12:11

How am I supposed to concentrate on the written questions with that bloke chuntering in my ear all the time?

EndoplasmicReticulum Fri 05-Jul-13 21:04:44

Very interesting, it will also be useful in my A2 biology lessons.

ElectricSheep Fri 05-Jul-13 23:48:18

What bothers me most is the idea that this sort of information will be commoditised.

I think ethically doing whole genome testing is acceptable if it is accepted that all the data is owned by the patient themselves and they have control over it all the time and in perpetuity.

Mouseface Sat 06-Jul-13 13:30:37

We are about to take part in the DDD Study (Deciphering Developmental Disorders) via the genetics team at Manchester Children's Hospital because of Nemo's (our DS's) Complex SN/LD.

They (Manc genetics) have so far failed to gain any 'sufficient findings' via saliva tests as to why he has a cleft palate, heart condition, curved spine, pierre robin etc...... so we're going to apply for the DDD.

Have completed. Have had genetic testing too.

Really interesting survey.
Unfortunately, it wouldn't let me post my form.
I'll try again tomorrow.

Completed it, I am studying genetics at the moment, so this is interesting, and I will follow the project. I took part in a very early trial for detection of the gene that cause cystic fibrosis in about 1990 and have been interested in the subject for a long time.

I did it because I find it interesting.

I answered the questions and left my contact details. DH and I have already had genetic testing to see if DD2 special needs are inherited. Turns out she is a little mutant confused grin

serin Mon 08-Jul-13 23:29:46

Have completed and I wish all involved in the DDD project luck.

Done.

My DS has a genetic condition, yet we have never had genetic counselling. His cousin, dads sisters daughter, has exactly the same genetic condition although with no testing whatsoever they are happy to say its not hereditary.

prettybird Thu 11-Jul-13 13:07:52

Completed it ages ago.

There is a genetic weakness on dad's side of the family: BRCA2 is rampant and there is also dwarfism and other genetic anomolies, not all of which seem to be linked (although different cousins exhibit it) but the odds of so many different problems manfisting in a single family grouping would be very long.

Fortunately dh's "leg" of the family doesn't seem to have picked whatever it is that is wrong. The BRCA2 gene was identified after his mother had died but the fact that she lived to 89 and his sister was over 60 at the time suggested that his mum didn't have it (it causes an aggressive form of early onset ovarian and/or breast cancer). He has been tested and is clear, so I haven't had to test for it. My aunt hasn't tested for it as it would cost her a fortune (doesn't live in this country) but it is a decision that her son is going to have to make for the sake of his children.

Mumsy2four Thu 11-Jul-13 18:21:45

I have a particular interest in genetic studies as my mother was adopted and also died young and so I have no family history or idea what to expect for myself and my children as the years go by. Would love to take part in a study such as this but have never had the opportunity.

Done. Ds has had genetic testing, more to rule out certain conditions but something did show up. I find the subject fascinating.

Done.

Its a strange one for me; my mum has a condition brought about by her genetics although her brother and sister are fine. My sister and I have the genes for this condition, but are fine. Yet my mum has been very, very (at times life threateningly) poorly all her life.

ICBINEG Tue 16-Jul-13 22:52:00

heh heh no way I would have anyone knowing more about my genome than me!

having a bit of a living in the future moment...

Lonecatwithkitten Fri 19-Jul-13 21:24:53

Very interesting that as I work in a clinical setting I was asked to answer the questions first as a clinician and secondly as if I was a participant.

Theonlyoneiknow Mon 22-Jul-13 23:03:21

I think yes, however what kind of impact would it have on life insurance?

WhoremoaneeGrainger Thu 25-Jul-13 16:02:21

Done. interesting questions

Niklepic Tue 06-Aug-13 16:03:44

Done. It turns out I'm a carrier of Duchenne Muscular Dystrophy and my son has the condition. Very interesting.

MrsDeVere Fri 09-Aug-13 15:09:27

We have just been put on the DDD.
This survey is very interesting. DS is adopted but from family. So if we get any information re genetic disorders etc we have to work out who and how to to tell.

mammal Thu 15-Aug-13 14:21:56

Done. Very interesting.

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