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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 ( 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,

KurriKurri Fri 31-May-13 19:11:29

Done smile - very interesting topic and survey questions.

Woo. Has anyone seen Gattaca?

Aussiemum84 Sat 01-Jun-13 16:21:34

Wow, with a young family, this questionnaire definitely got me thinking. I wonder how I would have answered these questions before kids!

Protego Sat 01-Jun-13 20:56:16

Oh dear it wouldn't go forward about 2/3 of the way through so I had to give up! Basically if I took part I would want to know period!

AtYourCervix Sat 01-Jun-13 21:15:18

Very interesting.

Protego, I think you have to answer 'nio' if you haven't answered 'yes' iyswim. I had problems with that too.

I did the survey because there's a lot of research around testing for autism at the moment, especially for families where there is already autism in the family - just so they can be ready to apply early intervention therapies in future children of course hmm

I'm very wary...

CharlieUniformNovemberTango Sat 01-Jun-13 21:22:09

This is a topic I often think about. My mother has a genetic neurological disorder and I had the option years ago to be tested but they hadn't isolated the particular fault in my mother (there were 11 identified so far but she had none of those common ones)

It's possible that they have found more now and I have recently been considering going back for retests.

But I'm not sure I want to know. It's a later onset disorder and I guess I'll know in 10 years or so anyway. Not sure if it's better to know now or not!

garlicgrump Sat 01-Jun-13 23:54:10

It was interesting! I enjoyed the explanatory videos; very well done imo.

Corygal Sun 02-Jun-13 20:50:44


MyLittleAprilSunshine Sun 02-Jun-13 21:04:52


Very interesting questionnaire.

This is very interesting. I'm having part of my genome mapped at the moment apparently as I'm the first person in my family to develop a genetic bowel condition (probably FAP). Mine wasn't discovered until it had already given me cancer but the testing will be able to identify which of several conditions it is and so then there might be treatments or screening available for the other cancers it causes. I hadn't thought about incidental findings, I hope there aren't any or they don't tell me as I have no idea if I'd want to know or not confused

Wow, Ruby - now that's a truly worthwhile reason for genetic testing and you're helping others too. Those issues around disclosure of incidental stuff...I ticked yes, yes, yes but the reality is a whole different matter. Much respect to you flowers

puckertoe Tue 04-Jun-13 10:13:38

Its a "big" subject and I'm not sure that we can put the genie back in the box, if we went the wrong direction with this knowledge.

MildlyMiserable Thu 06-Jun-13 22:22:49

This is something I would be really interested in, I and four of my cousins (none siblings) on my maternal side have auto-immune diseases, all different but with similar traits, surprisingly we have not had our medical histories cross referenced even though our consultants are aware of the situation.

ChippingInWiredOnCoffee Tue 11-Jun-13 18:53:27


I would love to be chosen to be a participant in this kind of genetic testing but only if I was given all the information. I wouldn't agree to it if they didn't.

Groovee Tue 11-Jun-13 19:30:15

Quite interesting to partake in.

eminemmerdale Tue 11-Jun-13 19:36:13

dd and I are part of the DDD study so it was v interesting.

Trills Tue 11-Jun-13 22:12:56

I was slightly disappointed that after asking "do you know what the DD study is?" they didn't offer to tell me!

JacqueslePeacock Tue 11-Jun-13 23:06:21

Yes, what is the DDD study??

hazeyjane Wed 12-Jun-13 06:36:08

ddd study here. It is the deciphering developmental disorders project.

Ds, dh and I are part of a similar project based in Holland, as well as a study about Kleefstra Syndrome,which it is thought ds has.

We had to sign a form which asked whether we wanted to be informed of any incidental findings.

CaptainJamesTKirk Wed 12-Jun-13 08:33:52

What an interesting survey.

iseenodust Thu 13-Jun-13 10:34:41

I think research participants should have the option of all information. If they choose to do anything with it is then up to them. I am more concerned about results being sold to insurance companies. We could also go through another spell like with early HIV testing.

attsumalex Tue 18-Jun-13 03:59:06

Scary and both Exciting what modern technology is capable of these days.
I believe they would be people wanting the results out of curiosity but psychologically may not be totally prepared for any such bad news.

MissHC Thu 27-Jun-13 12:51:28

Done - very interesting!

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


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.


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.


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.

QuizteamBleakley Tue 20-Aug-13 12:15:25

Done. I admit to knowing very little about genome mapping but being a bit intrigued. I'm adopted and know nothing of my biological parents health / ancestry. Now I have two DS's and think my curiosity in wanting them to know about any genetic 'defects' would see me Googling the hundreds of incidental findings just so I could 'know' to fill in the gaps. Also rather suspect I am descended from some kind of nobility grin

Really made me think about the implications both personally and for health professionals and institutions. Very good survey.

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