D-CYPHR study - is it ethical to donate your child’s saliva sample?

[OrdinaryGirl]

I’m constantly being presented with posts on Facebook asking for people to participate in the D-CYPHR study which is being done in partnership with the NHS.
It’s researching the genetics of diseases that start in childhood. The organisers are asking for a saliva sample from children / young people aged 0-15.

I believe in the value of this kind of research but to me there are huge ethical issues with parents giving consent for their child’s genetic information to be shared. By definition, someone under 15 can’t consent to that.

So whilst I would most likely take part if it was a sample from me, I’ve decided I’m not going to be giving them my children’s DNA samples. I sort of feel a bit unreasonable whatever I do here.

I’d be interested to hear people’s thoughts.

Bumpety-bump 😊

This type of study will have been approved by an ethics committee made up of experts and lay people. Would it help you to read their opinion ? You have to remember if we don’t consent for those who can’t consent for themselves like patients with dementia or small children , we are removing their ability to take part in respect that may lead to
medocal advances in traments for them.

If my child & family were all healthy I wouldn't do it. Selfishly I would if there was a condition I was specifically concerned about / or if my child had a rare or hard to treat condition. I don't have a lot of faith in NHS data security which sounds paranoid but there have been major breaches in my region. You also have to carefully read the small print - if they find a life limiting genetic condition will they tell you? Would you want to know? This does happen - rare but possible and people don't really think about the consequences in my experience (working with people with serious genetic disorders).