Should i consent for my child's images to be used in research?

[SmallMexicanChihuahua]

My 8-week-old son is currently being treated in hospital for an infection. It's apparently very rare and the doctors here have never treated this type of infection in a baby.

Yesterday the consultants were around to discuss treatment and asked if I'd be happy for images of the infected area (his head) to be added to his record and shared with obstetricians to help in future cases like this. I said yes, naively assuming that it would only be at a local level.

They've now brought a consent form for me to sign and they've pre-ticked all 3 areas of consent for using the images:

• as part of his records;
• for medical teaching, e.g. lectures, exhibitions, medical videos;
• for publication in textbooks, journals, medical articles or on the internet.

I looked up the doctor whom I'd be giving this consent, and his name is already on several articles where I can see photos of the children subject of the article: only a small black rectangle is used to cover the eyes but otherwise all features visible.

I'm now not sure if I want to consent to this. Most of the images (they asked for photos from our devices, they haven't actually taken their own as far as I know) include my son's face. I don't know if he'd be ok with this when he grows up, he may feel we've betrayed him by consenting to this. I feel uneasy that this wasn't properly discussed with me and that the form has been pre-ticked so that I consent to all options. Looking back I remember how the (otherwise lovely) doctor urged us to take photos as the events were progressing and now I can't help but think that he was doing this with his research article in mind. I do have an unresolved trauma after being tricked and harmed by a doctor so I might be overreacting. I do want to help people who find themselves in this position in future but it just feels too much right now.
What would you do? AIBU to be concerned about how my son's photos would be used?

One baby looks the same as the next and nobody will recognize the person from a picture of the baby.

If you are benefiting from medicine it seems a shame to be precious about this and prevent others from getting some of the benefits from what has been learned with the treatment your son has received.

Thank you everyone for the advice, perspective and the stories you shared.

I agree that sharing the knowledge is very important and definitely want to make it easier for anyone who finds themselves in our position in the future.

I think I was triggered by how things were not fully explained to me and how the form was pre-filled instead of letting me choose the purposes that I'm ok with; I'm very sensitive when it comes to consent in a medical situation due to prior experience.

Discussed it with DP and he wants to blur out our son's face in the photos we provide: his features are not important for their purposes but the whole head shape is. I'm not sure if they'll be happy with this but we'll check when we next see the doctor.

Chat to the doctors and see what can be done to the photos to anonymize them as much as possible.

I had a very large and unusual tumour removed and was asked to allow photos and parts of my notes to be used for research and educational purposes. I was happy to consent, and the doctor brought me through every photo so that I could be confident that I wasn’t identifiable. Everything was anonymized so it was basic information like my sex, age, health status etc.

At a follow-up appointment a while later, my consultant told me that I was the subject of a lecture the week before. I was well-received, apparently

My personal feeling was that if it made things even a tiny bit easier for a person facing the same thing I did, it was worth it.

Perhaps they only realised what it was affecting your DS from a photo somebody else had consented to with an older child?

I think that I would allow whatever they needed and not interfere with the images on that basis - that my child had benefitted from somebody else consenting to their child's image being published.

I know it's not quite the same but one of my molars featured in a dental journal - apparently, it was a 'beautiful example' of a tooth with supernumerary roots. It had four! No wonder it was causing me so much aggro...

Anyway, I wouldn't hesitate to allow the pics to be used - nobody will ever recognise your son in the future and it will benefit other babies.

I'd talk to the doctor and ask for a written reassurance that the face will be obscured but definitely let them be used.

My SIL is over 60 now but photos of her very large and potentially dangerous birthmark before and after treatments were used in medical textbooks for quite a while. MIL had copies of these and SIL inherited them and is still very proud. As the surgeon should be because there is absolutely no trace of the former birthmark or even any scarring.

I'd be grateful that my parents had let my image be shared to help others with my condition.

Yes.
My DD has a rare genetic condition as yet undiagnosed. When the Consultant discussed it with us she showed us pics of other children with similar conditions. We know the photos we had taken are part of ongoing research on rare genetic conditions. If it helps others, whether it is other parents or helps find more about the condition then it can only be a good thing.

They shouldn't have pre-ticked the boxes. I can see why you feel tricked.

No all babies don't look the same.
Would it be possible to take a photo of just the affected area?

I know people think that their baby is the most unique looking recognisable person on their planet but being honest all 8 weeks old babies look similar to other people. By the time he is six months old nobody will be able to recognise him in a journal etc.

I'm in lots of medical journals from when I was a child and I've never been able to find or recognise the pictures of me. I'm now 60.

I used to stand with just a pair of knickers on so they could see my whole body in front of a green background.

I don't do photos as an adult but I do always take part in trials and training sessions. I think it's a good thing to do.

I would if medical yes

It's unlikely they will use the photos you have taken, normally they will get medical photographers to take them.