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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

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

Great.

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

Done.

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

Done.

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!

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