My relatives didn't tell us about a genetic disease, I'm thinking of suing them now my mother is very sick

[SpiralHecate]

Hi, this is going to get complicated, I'll try and be clear as possible. I've changed the names.

My mother has four siblings, two sisters and a younger brother. Ten years ago her younger sister, Alice, was diagnosed with a genetic health condition called haemochromatosis. It's also known as iron overload, your body stores up iron over time and if left untreated it can cause severe tissue damage and health complications. If the condition is diagnosed early enough it can be easily managed.

Well when Aunt Alice was diagnosed she told her middle son Martin and my other aunt Rosalind, but ordered them not to tell anyone else in the family, and they didn't. My aunt Rosalind got herself tested and tested positive, and she had her two daughters get test and they're both carriers of the disease. I don't know what my cousin Martin did, but presumably he tested negative as he didn't say anything to his ex wife regarding their children. Alice's husband Cecil did test negative, though that means their youngest son, David could still be a carrier. However they didn't tell David, even years later after he'd married and his wife was pregnant.

Fast forward to 2 years ago and Alice died. I didn't know the exact details of how she died, as in our family people don't like to communicate, but she was in extremely poor health in her final years. We would have visited her but it was pretty clear we weren't wanted. At her funeral my aunt Rosalind let slip to one of Alice's daughter-in-laws, Violet, that Alice had had a genetic condition. Violet pressed her for details and found out it was haemochromatosis. Violet thought the rest of the family should know, but didn't want to rock the boat so didn't tell us, but she did at least tell David who said he'd get tested. Violet's husband Miles (Alice's eldest son) died 10 years ago, but they have two daughters and Violet got them tested, one of them tested clear but the younger one tested positive for haemochromatosis, it transpires Violet's family also carries the gene. Violet did ask Rosalind if she'd told my mother but Rosalind wouldn't give her a straight answer.

At this point Violet decided that she didn't care about rocking the boat and that this was too important to keep quiet about any longer and she messaged me on WhatsApp two days ago and told me everything I've detailed above. That evening I contacted my cousin in Canada, my uncle's son, to warn him that they all needed to get tested for haemochromatosis, no one had told them anything either. I also contacted Martin's ex wife to check if the children had been tested, she didn't know anything about it but said she'd ask him.

With regards to my situation, I've been on the phone today trying to arrange tests for myself and my mother and my son. My mother is poor health right now on account of falling down and fracturing her hip two months ago, and since the accident her mental health has taken a severe downturn, she's very confused all the time and her memory is fragmented. I remember that according to Violet, Alice showed similar symptoms before she died. I am worried sick that my mother has haemochromatosis, and that it has gone untreated until now on account of my family's decision not to inform us about it. While I was trying to organise a blood test for her this morning I had a call from my mother's carer that she'd found my mother stuck in the bath unable to get out and had to call an ambulance. My mother is currently in hospital and I'm waiting to find out if she's being readmitted, when I talked to her on the phone she confused me with Alice and was convinced that the bath she'd been stuck in wasn't in her house. If my mother has haemochromatosis, and if she'd been diagnosed ten years ago, her condition could have been managed then and she wouldn't be in poor health now. Of course she might not have it, but given both her sisters tested positive it's a high possibility.

I am furious about all of this. The level of my fury hinges on our test results, if Mum doesn't have it I'm still angry that Alice, Cecil, Rosalind and Martin kept the rest of the family in the dark about something so important, if she does have it then they have directly caused her harm.

Besides needing to vent, I also wanted to ask if anyone knows if it's possible to take legal action against them, for having withheld such vital information from us for 10 years? I'm not interested in getting money from them, I just want them held to account. They've done a lot of horrible things to my mother over the years, especially Rosalind, but this one is really beyond the pale.

Like others have said, there's nothing you can do. People are under no obligation to share their private medical information, regardless of how pertinent it may be to you personally.

That being said, it feels a bit like you are channeling your fear and upset over your mum into something you feel is actionable, ie: suing your relatives. People do strange things when they are feeling upset and scared. Concentrate on your mum for now, and I'm sorry you're having such a hard time.

My brother passed away from haemochromatosis related conditions. You can and should get tested as a family. It is however a very noticeable condition and would show up clearly on anyone who has been to hospital recently (in essence the iron count is not just raised it is massively so). So I do not think this is an issue for your mother. In the UK, hospitals would be communicating with relatives to make them aware, but I am not sure about other health services.

HIV is not a genetic condition and its correct that knowingly infecting someone is an offence

It’s very obviously different if you knowingly risk infecting someone with an illness. That is NOT what is potentially happening here. OP’s relatives haven’t exposed her mother to risk; they simply have a diagnosis which might indicate her mother also has the same condition. To be clear I absolutely think they should have informed OP’s mother and it’s awful that they didn’t, but they were under no legal obligation to do so.

Also, without wishing to derail the thread, you are also not obliged to disclose your HIV status to anyone, even if you are sleeping with them. You are required to practice safe sex, but since with HIV undetectable = untransmittable, if you are on treatment, have an undetectable viral load (and ideally use prophylactics) you won’t pass HIV on to anyone and don’t need to disclose. Many people still choose to disclose and personally I think that’s the right thing to do, but it’s not illegal not to.

You can only be charged in connection with HIV if you sleep with a person when you know you are HIV+, have not confirmed that you have no detectable viral load, and don’t use protection.

Weell for one HIV is an acquired infection and Haemotomochrosis is an inherited condition maybectheceider family should have morally shared the information but even if they did it wouldn't alter anything the Op,s mother has either inherited or she hasn't
They wider family are not responsible for passing on the condition.

Every word of this.

That’s awful OP, that’s inexcusable behaviour. God knows why they wanted it hushed up - it’s not as if it’s some kind of condition that attracts shame. Some folk are distinctly weird.

Did your Mum have surgery after her hip fracture? As PP said the hospital would have done a FBC then. If she did have surgery then Post Operative Delirium/Dementia is a possibility. My DM had it last year after a fall that resulted in a broken hip and apparently it’s very common, especially in the elderly and yet it doesn’t seem to get talked about as a possibility. The things my DM believed happened weren’t so outlandish that it simply had to be untrue. She still strongly believes that it’s true and gets very upset if anyone tries to tell her otherwise. It’s awful. Hope your DM improves soon.

Have told them how angry and upset you are? That will hopefully go a little bit of a way to making you feel better. Have they expressed any sense of regret or guilt?

Thanks for all the replies. I think some people misunderstood parts of my post, but that's fair enough there were a lot of details. I do now understand that I have no legal recourse towards the relatives who knew about Alice's diagnosis but still chose not to inform us after her death. I will be unwatching the thread now as I have my answers. Feel free to keep talking amongst yourselves.

Agree - it's a potentially serious and common condition but fairly easy to diagnose from routine blood tests and wouldn't cause falls or memory decline (both of which are incredibly common in older adults for many reasons).
A woman tried to sue the NHS for not disclosing that her father had Huntington's disease (life limiting genetic condition) and she was unsuccessful.

Direct harm would be passing on a communicable disease, or for example if someone knew she had heamochromatosis and gave her an iron infusion or forced her to constantly eat spinach and red meat.

If she has this disease, she has it regardless of when any other effected people got it diagnosed, they haven’t given it to her.

Heamchromatosis doesn’t usually manifest in women until they’re post menopausal as the menstrual period is effectively a form of blood letting, like the venesection that is often used. So the iron doesn’t build up in the same way as it does in men.

If she has had blood tests at all throughout her adult life she’ll almost certainly have had a FBC checked, as well as LFT’s - which would throw up numbers giving rise to suspicion. She probably had an FBC just a few weeks ago when she broke her hip.

You certainly can’t sue anyone when you don’t know if she even has haemochromatosis, and even if she does - you can’t directly attribute her current ill health to that.

Not even similar. A PP has laid out, some communicable diseases are notifiable for public health purposes, or must be reported to sexual partners (uncontrolled HIV). Haemochromatiosis is not communicable so why should family members be held accountable in any way for others' wellbeing? They didn't expose them to the risk and don't have a particular duty of care for them so how on earth are they responsible for any crime if they become unwell or die?

You sound completely rude and like you have zero empathy!

If someone is diagnosed with haemochromatosis then all their children will be at least carriers. That means all your cousins who are the children of Rosalind and Alice definitely carry at least one of the genes. David, Miles, Martin etc are all at least carriers. Whether they are more than just carriers will depend on their other parent. Same with their children.

I know it's upsetting to think you and your family could have been carrying a disease all this time, but try to stop thinking of it as information that has been withheld from you. Because there is no automatic entitlement to know anyone else's medical information. It is their information to share if they wish to do so. A lot of people just don't think beyond themselves or their immediate family.

What about when people are HIV+ and knowingly risk infecting others, they can be charged for that? Why is this different? They're knowingly keeping information from other people that could, at worst, lead to an early death or severe health problems? Isn't that, at worst, manslaughter

You have pretty much answered your own question. With HIV it’s not about privacy it’s about willingly and knowingly proactively infecting someone through the action of having sex when you know you have a viral load. That’s different to having a medical condition, also using HIV as the example, and not telling anyone, as is your right. As long as they don’t go on to knowingly infect someone via a physical act they are not obliged to provide their personal health information to anyone.

With genetic diseases/anomalies, no one is physically doing anything to anyone else to infect them.

Millions of people have genetic conditions and never find out, being symptom-free. Whether their offspring will develop those conditions with symptoms depends on a combination of heritability pattern, chance and environment.

There is an argument for compulsory disclosure. The arguments against it include a massive testing burden, distress, hypervigilance and stigma. Hemochromatosis is readily manageable and almost always picked up on first manifestation of symptoms, so the potential costs of disclosure would probably outweigh any benefit.

I'm sorry your mum's ill, OP, and wish her a full recovery. It's not your aunt's fault, however.

If someone is diagnosed with haemochromatosis then all their children will be at least carriers.

My aunt was diagnosed years ago and her daughter was told she was NOT a carrier. My mum then went for testing and also, not a carrier. I don't know much about it and can't ask as both my mum and aunt are dead now.

We are of Irish extraction and I do remember my aunt saying she was told the condition is common among Irish people.

the condition is common among Irish people

Gosh, it is! At one in ten Irish, it's 15 times more common than in England or Wales

You can iron load if you are just a carrier, although i think it is rare.

I would tell as many people in the wider family as possible so that would include your mum's cousins and their families. The more people who know now, the better and it would piss of Rosalind etc al because they can't stop you.

You can't sue anyone for withholding their private medical information.

You can share the information that you know to ensure people make the right choices for them.

This is completely different.
If you are HIV positive you are no obligation to inform anyone else. If you are having unprotected sex with others and are in a transmissible state you can be charged. However it is vanishingly rare. I think there’s only been one prosecution in the UK. As I understand it was a GBH charge.

Someone keeping their medical information to themselves does not increase spread amongst anyone already living. The genes have been passed on at the time of conception. What offence could someone possibility to charged with? It doesn’t even come close to meeting the requirements for manslaughter.

Changing the law to require people to disclose information about genetic conditions would take us down a very dark path.

Why do you have to be nasty to the OP - they simply asked a question because they are upset. I suggest you report your comment and ask for it to be removed.

I had the same thought as others about HIV but I guess the difference is that you are effectively trying in infect someone with it, whereas a person may never get the genetic illness.

I’m so sorry for your situation. You may not be able to do much but you’re certainly not unreasonable for wanting to! I know medical privacy is important but if someone else is affected I can’t comprehend that people are ok with it being kept secret. People have been criminally charged for knowingly spreading STDs and although obviously this is a totally different type of condition I feel it’s horribly unfair what they’ve done to your family!