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?

Surely raising awareness and allowing medics to increase their knowledge about your son’s condition is beneficial for other sufferers? Medical research is incredibly important, they are helping your son using knowledge they have learned from other children. No one but those with an interest in the field will see the pictures and they will be interested in the condition, not the child per se

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 had to keep a photo diary of my dc in order for the doctor to be able to diagnose a progressive condition. I think this is a more likely reason for the request, to support a diagnosis.

That said, if you aren't comfortable, decline permission. Or select a very few photos that you are comfortable sharing.

I would consent. when the eyes are blanked out and the child has changed a lot it is fine.

I would provided that it was completely anonymised and the shots were close-ups of the infected area and not the whole face so that my child couldn't be identified from the pictures. I think showing the entire face/head area is wrong.

I would also be uneasy from what you've described.

Depending on the actual condition you might have no choice but to photograph the whole head and face.

2 of my sons images were used for similar reasons when they were babies (now aged 8 and 14).

I consented to my DD being photographed. They thought she had a rare condition (although clinically diagnosed at the time, they seem less sure now).

They will most likely take their own photos. I had to take her to the teaching side of the hospital which I didn't even know existed. It was like a mini school/uni! She was photographed in a room that was clearly for this purpose. I did it to help future generations of children. She was under 1 at the time.

I had an enormous lipoma on my lower back/bum. I had photos taken in the hospitals rather swanky photo studio. They needed them for planning the operation but asked to keep for research. My bum and overweight tummy and huge growth now embarrassingly immortalised. I figure if some poor sods lipoma grows in same place and size then their surgeons welcome to compare notes and photos.
They did a fine job removing it by the way!

If you don't feel ok with it then don't op, if you are thinking it's something you'll regret and bring up past issues then I'd advise you to not.

Sorry to hear about your experience but to be fair this could be something good that comes out of a bad situation for you and your son.

Regardless of what you choose to do I hope your little one gets better soon

I have a rare condition and have allowed photographs of myself to be used by doctors in this way, although in my case it was photos of my feet so being identified was very unlikely.

I wasn't diagnosed until in my 20s, I'd been to the GP about my blistering but EB is so rare they didn't know about it so couldn't consider it as a cause and I was told it must be because of my eczema. It was by seeing pictures of people online with EB years later when I googled chronic blistering that made me realise that is what I had and got me my referral, genetic testing and diagnosis.

So I think images are helpful to share but only if you want to - don't feel you have to unless you're comfortable with it. They can always be shared at a later stage if you or he wants to do so.

My daughter had loads of pictures taken for research and training. I never gave it a second thought…

I would. Baby photos rarely look like them when they are older

I wouldn't hesitate at all.
I am part of a large research study and have been for 30 years.
If anything they find out from me goes part way to helping somebody else in the future, I will be thrilled.

My cousin's daughter was born with so severe heart issues, it was a miracle she survived. Her case and her life has been published invarious medical journals and was used for various research documents and lectures.

She is an adult now and extremely proud of "her contribution" to science. Only her initals were used so apart from her actual doctors nobody knows who the female is, who is mentioned in all the books and journals.

I wouldn't think twice of giving consent to have my child's pictures shared. Especially a baby picture.

You are in a stressful situation and he’s your very precious baby but in reality the images will be absolutely anonymous and whilst he’s instantly recognisable to you he won’t be to anyone else who is looking and he certainly won’t be within a few months.

You aren’t letting them do this for entertainment purposes ( Take a Break style magazine) it’s for serious medical education that will benefit babies like your DS. I’d be really pleased if something positive came from a frightening and unpleasant experience.

I hope he’s home and well very soon.

@SmallMexicanChihuahua I parents were in a similar position when I was a baby many, many years ago. I had a very rare infection and they also wanted to photograph me and use my details in training. My parents agreed readily.

I am immensely proud to be that baby!!! I have no idea where the photos now are and I wish I did. I tell everyone I know that I'm famous! 😂

I honestly feel very proud to be that baby that perhaps helped doctors save another baby's life!

I don't think your child will feel violated. And no-one would recognise him.

I’d agree. Without research where would we be with any illness?
Your child won’t be identified, why would your soon even need to know?

You do not have to consent if you aren't sure. That is good enough reason.

I consented to something similar for myself. They were very keen to make sure I was absolutely sure.

You shouldn't consent if you have any qualms about it, it's completely up to you.
I'd do it - there will be nothing identifying his name in the journals, and he is so young that he won't be recognisable.

We had similar with DS, he had an osteochondroma on his shoulder, which is like a big lumpy, bony growth. It's fairly unusual. After the surgery we were asked to consent to having photographs and X-rays used as a teaching aid, as the lump was on his shoulder, part of his face was visible in the photos.

We did consent as DS very much trusted the surgeon and appreciated that it was important for students to learn looking at case studies.

Oh and meant to add DS was 12 years old at the time, so easily recognisable.

Nobody is going to recognise an 8 week old baby. They all look the same.

When I was about 7, I suffered from a skin condition on my face. My mum consented to images of my face to be used for seminars and text books and medical training etc.

I think it is an ok thing. Nothing to worry about.

We consented to this for our son when he was a newborn too. He has a large port wine stain birthmark on his face. We had his pictures taken in a room set upon the hospital for this very purpose, so I assume it’s quite a common thing. I’m happy if it helps for future research - no one will recognise him

I would too. He won't even know about it unless you tell him when he gets older.

My DD had a rare skin infection when she was 7 (SJS). If it wasn't for all the people who'd agreed to their photos being taken with this, we would have been totally in the dark about this terrifying condition.

I hope your little babby is OK