I shared details of my brother’s degenerative disease without his consent | Ask Annalisa Barbieri

My dad died two years ago, exposing a sea of secrets and lies. He’d had a degenerative condition, but was totally in denial – and while it was a known excuse for his moods and lack of interest in his family, he did little in his lifestyle to mitigate its effects.

After he died, we discovered there was a dominant gene he could have passed to his children. My brother and I have been tested – my sister does not want to be – and my brother was found to be positive.

After I had my genetic test, I was advised to contact our extended family. Thinking I was being honest, I emailed our cousins the information, sharing my brother’s diagnosis paperwork to help them get referrals.

Now, my brother is livid that I shared his medical history. I’ve apologised for sharing his information but not for sharing my dad’s. I can’t believe our wider family don’t deserve to know this. A dominant gene is relevant – particularly because it indicates a causal link, but not a definite diagnosis, meaning it could be dormant and be passed down.

I’m writing to ask if I did the right thing and how best to move forward. I’m tired of the legacy my father has left behind but I feel like I’m being punished for doing the right thing.

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I’m sorry to hear about your dad and the legacy he’s left you with. I wonder if you’ve had the results of your test? That must weigh heavily on your mind. But your brother’s testing positive must be a big worry for him, and it sounds, by your own admission, as if that hasn’t been acknowledged.

It’s clear that you’re very angry with your dad, and he’s not here to take it. I wonder if you are now misdirecting it.

To help me answer you I consulted psychotherapist Katherine Walker ( and lawyers Jonathan Wheeler and Amanda Garner from Bolt Burdon Kemp. While Walker empathised with what you were trying to do, we all agreed that sharing your brother’s information without his consent was a no-no.

The fact remains you could have satisfied your need for helping others, and sharing the information about the degenerative condition, without involving your brother and certainly without passing on his medical data. As Wheeler and Garner pointed out, passing on his papers without his consent is a breach of data protection laws. Your brother could, if he wanted to, make a complaint about you to the Information Commissioner’s Office, although the chances of it being interested in this (it mainly concerns itself with organisations leaking data) are minimal at best. However, it’s important to realise that what you did was wrong and no amount of justification can make this right.

“You need to own what you’ve done and take responsibility for it,” says Walker. “You’re trying to correct the generational pattern and right wrongs of the past, but when we do this we sometimes overcompensate. While you’ve avoided secretive behaviour, you’ve invaded your brother’s privacy in pursuit of the truth.”

Walker suggested you try to explain to your brother that you did it with the best intentions but admit that “you went too far and his information wasn’t yours to share”.

With a bit of time, you’ll see that a more nuanced approach is best. Discretion and secrecy aren’t the same thing. Also, it’s not up to you to (try to) right your dad’s wrongs. It sounds like your family may have difficult times ahead; I hope you can find a way of supporting each other.

Every week Annalisa Barbieri addresses a family-related problem sent in by a reader. If you would like advice from Annalisa on a family matter, please send your problem to Annalisa regrets she cannot enter into personal correspondence. Submissions are subject to our terms and conditions: see

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