Woman who inherited fatal disease sues NHS

[FrauleinF]

www.bbc.co.uk/news/health-50425039

Upshot - woman is suing NHS as they didn't inform her about her father's Huntingdon's diagnosis. (an incurable inherited degenerative condition hitting in mid life characterised as being like Parkinson's, Alzheimer's and MND all rolled into one)

He had shot and killed her mother in 2007, and was convicted of manslaughter on diminished responsibility due to his mental health issues - which were confirmed as Huntingdon's shortly afterwards.

On finding this out, and in spite of the NHS providing family therapy for them both together, ostensibly for both of their benefit, his wish for the, at the time, pregnant daughter not to be informed as she might have "killed herself or had an abortion" was enough for her not to be told of his diagnosis. She found out by mistake shortly after the child was born, got tested, and it turns out she has it too - her daughter has a 50% chance of also having the disease.

I know patient confidentiality is a somewhat grey area in the UK, even if any diagnosed medical issues are potentially damaging to other individuals.

This strikes me as a somewhat feminist issue - although she was always going to develop the disease whether she had been told or not, she has potentially made her child into her carer. She also maintains she would have aborted the baby rather than have subjected her to this horrific disease.

Personally, I hope she wins her case. I am a carrier of Cystic Fibrosis and am lucky that my father told me about his late brother and advised me to get tested before having children, so am very sympathetic.

Also we are basing decisions on what we know now.

Who is to say that in 5 years time there won't be a massive scientific break through where x is cured.

What are the ramifications then?

People are extrapolating about what a legal outcome, in this specific set of circumstances, might mean for the law more generally.

Compelled testing will only result in HD being driven back into the shadows and being a source of stigma and shame within families.
As an 18 year old, how would you feel if had to get tested for the 'worst disease' known to man and if positive, there is nothing you can do to stop the protein building up in your brain, there is no cure, no treatment pathway, not to mention the personality changes, cognitive difficulties and peg feeding etc in the future.
Many couples if they are aware of the disease prior to having children will come to an informed choice and there are methods (within the NHS lottery) of having HD free babies without knowing your own positive status. We need this to be available more so people really do have a choice.
Please do remember though that a high proportion of us have had children before we knew about HD. We carry that guilt every day of our lives. But we can't blame our parent for something they didnt know or if they did know, was in advanced stages before a rational discussion was had. That is if they are even still within the family.
Thank goodness for the private billionaire funding research, there is little or no funding from the NHS.
I just don't see where this case is going. Are there other genetic diseases with such a 50/50 definate rate, that can cause impairment physically, mentally and cognitively?

What ought to happen in many cases is simply not always what should legally be required to happen

Goodness this is a real swing from one way to the other, but overall I think it has to be the above. Ought to and legally required are two very different things. I don't think it should be legal as it is his medical information.

However on the other hand I have a genetic condition, my DS obviously has it too, what if I never had got his diagnosis confirmed and therefore allowed appropriate medical pathways. Don't I have a moral and/or legal obligation to protect his health?

She should have been told as the hospital knew she was pregnant & therefore ran the risk of passing on the disease.,
I’d be bloody well fuming if they’d kept this information from me.

Why is this in feminist chat btw?
What has this case got to do with feminism?

Scoundrel it's because it has to do with abortion.

We have Huntingdons in my family. I’m not a carrier.

It’s easy to say be open about it and keep people informed. But in reality it’s terrible. Very very hard to discuss or be open about. When l found out it was in my family,nobody wanted to get tested, because nobody wanted to know.

It caused a huge amount of anger and upset. There is no right or wrong, but it is very very difficult to be open about it. My sister had it my brother didn’t. Would their lives have been easier if they knew? I’m not sure they would have been

I don't think it's just about abortion.

If she wins it then becomes about the mothers responsibility of having 'defective' children and whether that was irresponsible, selfish or could have been stopped. It wouldnt be about a father failing to disclose his genetic history, it'd be about the mothers 'decision' (which might not be informed nor even consentual) to have children. It would fall on women not men to be the responsible party in the eyes of society.

There are ethical debates about whether certain groups in society should be forecably sterilised. This would feed into that.

That's certainly a view I disagree with but others out there might wish for this to be changed in some way in the future.

@SugarPlumFairyCakes - thank you for your kind words, it means more than you know.

The thing is, I've inhabited the world of Huntington's for so many years now, attended research panels, conferences and contributed to patient surveys. I always thought I'd want to know and would face it head on, balls out. And then when it came down to it.....I couldn't. Knowing what lies ahead, I just didn't want to sit and wait for the symptoms to start arriving. The onset of Huntington's is sneaky and mimics ageing and general stress. Moodiness and slight forgetfulness are often the first signs, who doesn't feel like that sometimes?! And there's the twitching. That twitch you get as you fall asleep - is that the Huntington's starting or just a regular sleep twitch? It's fucking merciless. And the disease once it starts is a downward spiral into dementia, loss of dignity and misery for you and your family. You can't swallow, you choke, you can't move - other than the painful and lurching twitches - and it's a slow and relentless march to death. Is it any wonder there's a high rate of suicide amongst those diagnosed? No cure presently, and no way to slow the disease. I'm honestly not being condescending but you can't just pass this information onto someone without being absolutely certain that they can cope with this. 90% of people who go for genetic counselling when they're symptom-free end up walking away without taking the test. Knowing that 1) you're "at risk" - my status - is a massive burden than you have to learn to live with and 2) once you test positive, you're just waiting for the inevitable to kick in, knowing what awaits.

I really and truly understand why this woman wanted to know. I do. I wasn't happy when I found out the information had been kept from me. But the consequences of being entitled to someone else's medical information are just huge. As are the consequences of finding out that you have this dreadful disease in your family.

Having lived and breathed this disease for many years while I cared for my dad until he passed, I can tell you that the vast majority of people would have been happier to have never known that they were at risk, and not to have lived their life with the possibility of this hanging over them.

For example, imagine if it exposes a woman had a child with another father but had concealed the truth. What might be the implications of that?

I think this is a very real danger of what many posters are calling for.

I’d be bloody well fuming if they’d kept this information from me.

THEY didn’t keep the information from her. HE did, the dad. The NHS is not responsible for everybody’s parenting.

Consider these scenarios if she wins:

Doctors say to HD person they have to tell children. He/she says they have. Do the doctors have to check? How far do they check?

Doctors tell an adult child they have a 50% chance of inheriting it from their father. Adult child agonises over what to do next. Mother reveals may be paternity debate to be had first before worrying about testing for HD.

Doctors tell an adult child they have 50% chance of HD. Person is angry because they wouldn’t have wanted to know. They sue. Or commit suicide. Or kill their children as a result.

The only way this would work is if every single person in the country registered their preference with “I would/wouldn’t like to know if a parent is diagnosed with HD” in the same way as registering for organ donation, and doctors could see if they were happy to be told. Which from a practical sense, would be nigh on impossible.

I haven't read the whole thread but how the fuck is this a feminist issue? It is very sad and I feel for the family but how would this be any different if the guy had a son whos girlfriend was pregnant? The baby would still have a 50% chance of getting HD.

@RedToothBrush - you've touched on something I haven't even mentioned but yes - the irresponsibility of people who MIGHT have Huntinton's - we are slammed for having children. People have said some really terrible awful things to me because I had children before being tested. I could have passed this disease on and for that reason, I'm apparently the worst kind of human that exists. There's a YouTube video on the subject of Huntington's and the comments on there aptly show what the world thinks of people like me.

I always swore I would get tested and then my contraception failed. And I tried to have a termination because I felt I should know first - but I couldn't do it, it just wasn't right for me. So instead, I brought twins into this world and I could potentially be passing Huntington's to them both. I have to live with that - but I still think that taking the chance was better than termination because who knows when a cure may be found?!

@TheEmojiFormerlyKnownAsPrince - I'm so sorry to hear about your family, I know what it's like and it's utterly, utterly shit. And you're so right, knowing is a burden and in many ways it's incredibly unhelpful. For many, it wouldn't be the right thing so how would the doctors make that call?!

The only way this would work is if every single person in the country registered their preference with “I would/wouldn’t like to know if a parent is diagnosed with HD” in the same way as registering for organ donation, and doctors could see if they were happy to be told. Which from a practical sense, would be nigh on impossible.

And if she wins then a similar case could be made for every single heritable disease or syndrome. Which as genetic testing gets better which be more and more over each generation.

And if she wins then a similar case could be made for every single heritable disease or syndrome. Which as genetic testing gets better which be more and more over each generation.

Then will we see individuals pressured into having genetic testing done or not be able to get life insurance, mortgages and things?

Will pregnant women be forced to undergo antenatal testing and then termination if positive because the NHS will fear being sued by children born with disabilities that the NHS knew, or could have known, they had?

This is a genie and once out of the bottle there will be no way to put it back in.

Why would anyone argue for individual rights to be removed?

it should be noted that this daughter wanted to keep her identity secret so neither her daughter OR HER SISTER found out about the diagnosis... which is why the judge ruled against this - why? because this disease has no cure & there is a 50% chance of getting it from a parent. It is a terrible disease - imagine living with knowing that you will get it or might get it - it affects you with a mix of features that are like having parkinsons, dementia & mental health disorders (Woodie Guthrie had it) Would you want to know? I am not sure I would - & lets hope any children born now - might- find a treatment in the future even if there isn't anything yet. & you can still have 30 or 40 years of decent life - would you want to live each day fearing that a feeling of mild depression or shakiness (from a fever, say) was the start of this illness - it would be a nightmare. & note the logic of her saying she wanted to HIDE it from her sister but to sue because she, herself, wasn't told.

People are extrapolating about what a legal outcome, in this specific set of circumstances, might mean for the law more generally

That's kind of how legal precedent works.

RedToothBrush's post at 19.42 is spot on. The NHS could and should not give her this information.

she wanted to HIDE it from her sister but to sue because she, herself, wasn't told.

Is this true? If so what on earth was her reasoning? Surely that's out and out hypocrisy on her part?

she wanted to HIDE it from her sister but to sue because she, herself, wasn't told.

That’s quite baffling!

I am pretty sure that I wouldn't want to know about it if I could potentially have it.

The psychology behind some of these kinds of questions, and the motivation of this woman, is interesting. I see it in part as being about control. People feel like if they have more information, they have more control and will be able to avoid bad outcomes. And with genetic testing in general I see this when people talk about it, sometimes testing for quite obscure things. There is almost an idea that if you know enough, then you can do all the right things, and then you can avoid the problems.

I suppose my psychological make-up doesn't really work that way. I think the things we can control are really very limited, and I'm not convinced that the illusion of control is really very helpful.

It’s because the woman was not given family medical information that may have influenced her decision on having a child. There’s no male equivalent of that choice or that decision.

She hasn’t told her sister, but is arguing the NHS should be obliged to. I don’t see how she can possibly succeed.

It’s because the woman was not given family medical information that may have influenced her decision on having a child.

There's no such thing as family medical information though. She's arguing that she has the right to an individual's medical information (whilst apparently arguing that she has the right to confidentiality).

There’s no male equivalent of that choice or that decision.

Of course there is. A man could argue that he wants the same medical information before deciding whether to have a child or not can't he? Why does it not apply to men as well?