Parents of 11-17 year-olds invited to review website for research study

[Alishamanc]

Hi mumsnet members,

I am a PhD student at the University of Manchester, looking for volunteers who are parents/guardians of children aged 11-17 years, and fluent English speakers.

We are evaluating an information resource that has been designed to help young people make informed decisions about taking part in genetic research. We're interested in the views of parents/guardians of young people, who are often involved in helping their children to decide.

You would be asked to review an online information resource that has been designed for young people. You would then be invited to provide feedback however is most convenient for you:

-In a focus group of not more than two hours, or
-In an interview at a location of your convenience, if around Manchester; or over the phone

You would be asked to give your views about whether you think the resource is a suitable way to provide young people with information about participating in genetic research. Neither you nor your child would be invited to take part in actual genetic research.

If you're interested in finding out more, please contact me, Alisha Gibson, by email [ [email protected] ] or feel free to reply to this thread.

Focus groups would take place at the Nowgen Centre which is close to the University of Manchester, on Grafton Street, just off Oxford Road. You will be compensated for your travel expenses if you attend a focus group.

Thanks very much for reading!

Hi yes I would be interested I have a 13 yr old, what though is the research subject?

Hi, thanks very much for your reply.

The aim of the study is to make it easier for young people to decide whether they want to take part in genetic research, if they are asked. At the moment, research participants are often provided with much written information that may not be user-friendly. We have created an alternative - a website - based on feedback from young people and parents.

The website describes a hypothetical study which a young person might be invited to take part in, though there is no actual genetic research study taking place, and it's just the quality of the website we're interested in evaluating.

The reason this project is being carried out is that recent advances in technology make it more likely that people could be invited to take part in genetic research in the future. Further to this, new European regulations mean that more children and young people are going to be involved in clinical research, because in the past medicines were not always properly tested for safety among children.

The problem is, we don't have enough knowledge at the moment about the best ways to provide this sort of information to young people because relatively few have been involved in genetic research in the past. We're hoping to improve the way information is provided to make it easier for young people and their families to make informed decisions about participation in research, and to do this we want to speak to young people and their parents to get their views to make sure we're taking the right approach.

I hope that somewhat answers your question. Feel free to let me know if there's anything else you'd like to know. If you think you might be interested, you can email me [ [email protected] ] and I can send you a participant information sheet which explains what you would be asked to do if you decide to take part.

Thanks again for your reply!
Alisha