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.

Terribly sad case - and throws up several important questions on whose feelings take priority.

Sorry, I’m maybe being very stupid here but my understanding is the NHS cannot disclose someone’s medical information to another person without their consent. I don’t understand how she can be suing them for this.

Btw I am very angry on this woman’s behalf that her father deliberately kept this information from her but I still don’t think the NHS should have told her.

I was expecting to disagree as think we have an increasing culture of unfairly suing the NHS, but in this case hope she wins.

Obviously a very sad case, but honestly if they find in her favour I'd be worried about what that might mean for the future of confidentiality - seems a very slippery slope.

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.

HIS wish.

Of course a child has the right to know of an inherited disease.

Of course a child has the right to know of an inherited disease.

Well as it stands, no, they don’t. This case may change that.

I hope she doesn’t win. You cannot just go around telling people about other people’s medical diagnosis. It will drive a truck through patient confidentiality.

If she won this case would that mean the NHS would then have a legal obligation to inform a person that their spouse had a STD?

It is a hugely important thing to test ethically and legally as genetic testing becomes widespread - if you choose to have a genetic test and are fully informed and prepared, what about findings such as this that affect family members. Whose information is it.

If she won the case then where would it stop? Would parents have to provide their genome to all of their children to cover all potentially inheritable conditions?

This case as tragic as it is is ridiculous and the lady is targeting the wrong party in the suit. She should be suing her father.

I'm on her side on this one.

I can see where she's coming from, but I think it could be a slippery slope. I could see abusive controlling men using the case to demand information about their wife because it could affect their children. Worst case scenario but not that unlikely unfortunately.

Huntington's Disease is a very complex illness and there is no 'usual' age of onset. Juvenile HD, although rare, is early onset of the illness. Many people have families without being aware they are at risk of the disease. Mental health difficulties can manifest years before any physical symptoms, or there could be no mental health symptons, no physical or both.
As someone with family HD, I am uneasy about this case and implications for confidentiality and the NHS going forward.
What I haven't seen reported is if the father even had mental capacity for the one off decision about telling his daughter, or if he was in denial himself. HD frequently causes perservance of thoughts - and he could of lacked any insight into how HD was affecting him.
No easy answer - HD scars everyone in affected families.

Of course someone who has a 50% chance of having a serious, life threatening disease, and a high chance of passing it down to her kids (not to mention the impact on the kids of watching their parent go downhill) should be told about it once it's known. I hope she wins.

A change of law to address specific situations of this type would not affect patient confidentiality in the vast majority of cases. But where serious harm can be done to another person as a result of upholding patient confidentiality, that person's right to proper medical treatment should trump the original party's right to confidentiality.

You have to consider who is at risk of greater harm here, the woman with a serious medical illness, or the father who wants to keep her in the dark so he can influence her choices.

There’s absolutely no way she should or can win.

Plenty of people with a family member with Huntington’s Disease don’t want to know. People don’t want to live their lives with that air of inevitability over them. Which is their right. So consider the reverse. The dad says “oh my daughter would definitely want to know”. How do doctors determine if she really would want to know? Just by asking her if she would want to know is disclosing the fact there is a genetic problem. What if she, or someone else in that scenario turns around and says “I wish you’d never told me, it’s ruined my life”. It would impact so many things: mood, depression, life insurance. Everyone has the right not to have a diagnosis, or 50% chance of a diagnosis thrust upon them and it certainly can’t be the responsibility of doctors to do that.

What the dad did and why he did it is a feminist issue, but this legal case is an almighty medical confidentiality issue and I do not think she should win.

I’m not sure how it works but would him lacking capacity to make that decision mean he had a nominated person who handled his medical appointments etc? Like a next of kin or power of attorney?

Suing the wrong party to get money, IMO. It should have been in court documents that he was not guilty by reason of insanity and his diagnosis in the records.

Nice she got the family therapy, due to budget cuts, plenty these days don't.

But hey, let's sue 'em and make there be even less money.

Not a feminist issue.

I'm very torn if it was me I wouldn't want to conceive a child who had a potential of Huntingtons an awful disease I've nursed generations of families with this disease. I always remember one family one sibling had the disease parents were distraught they'd unwittingly passed this disease on. The other sibling was tested and not a carrier the guilt this family all carried because one sibling went onto have a family and the other didn't- but what I always admired was the openness of the whole family. I've seen other families that have not been so open and although I may not have agreed at times it was there right to have confidentiality.
In my own case I had a child by doner through the NHS who has a genetic illness (unfortunately a rare one that wasn't screened for) my first thought after the initial shock was I had to stop this man donating again so other children don't have the genetic condition. The NHS were brilliant and although couldn't tell me the details reassured me it had been resolved.
I'm glad this sad case has come to the attention of the media because it fuels debate on the issue. protecting one person's confidentiality to the detriment of another's human rights doesn't sit right with me but how we deal with future situations like this I'm not sure.
I think this could cause major issues within the NHS is it right that they'd have to inform every sexual partner if they diagnosed someone with an sti, what would the cut off point be in terms of long-term consequences of potential illness or would they just limit it to genetic conditions. How would the NHS fund this they can't just say you may have ☓ disease without having the support in place for that patient. How many people in the past are walking around ignorant to the fact they may have a genetic condition how do you go about tracing these people especially when they could be illegitimate children this effects too - a big can of worms.

Iworkatthecheesefactory

I wasn't saying he didn't have capacity just that he might not have had. I understand his daughter is the next of kin and POA wouldn't be applicable for that decision.

Plenty of people don't want to know. It can be seen as a death sentence as there is no cure. People have committed suicide when told.

It's a very individual, personal decision, people need to be supported to make the right decision for them.

You cannot just go around telling people about other people’s medical diagnosis.
No one is arguing this should be the case.

But if there is a risk you have an inheritable disease there should be a way for you to give consent to be made aware of the fact. You don't need to be told how they know or which parent has it.

And to follow up. If the responsibility then falls onto doctors to tell all relevant relatives of their risk, how do they go about that? What if someone with HD has 10 offspring? What if there are 10 offspring, 3 of which his current wife don’t know about? What if they are estranged? Are doctors meant to search electoral rolls for those deemed relevant? How do they approach those people?

“Oh hi, is that Mrs Smith? Yes, this is Dr Jones from the NHS. You know that biological dad you’ve never met? Well I’m legally obliged to tell you he has Huntington’s disease and you have a 50% chance you have it too. Let us know if you want to do anything”.

It just isn’t possible, sorry.

It also works the other way. Adult children have had the test and been positive. A parent (it is usually obvious which one) will then know without a shadow of a doubt that they have an incurable disease, even if they aren't showing physical signs yet.
Is it their right not to know?

Part of the problem though, in my eyes, is that as medical research progresses more and more conditions are becoming genetic/inherited conditions. Particular cancers for instance. And I'd expect, in future, that we'll discover that many more health conditions are rooted in our genes. Predisposition to heart disease, PCOS etc etc

But given that the issue is duty of care vs duty of confidentiality, I can see no reason why the outcome would only be applicable to genetic conditions. Surely any condition a person has which could potentially be passed on to another individual would then be fair game for divulging.

This is a tough one for genetic ethics, depending how it goes a good one to discuss in classes (most undergraduate courses discuss Huntington’s).

Generally how it goes is it’s obvious the parent has it so the family knows. I would think that the fact the mother was murdered might be a factor in that typically it would be the spouse that would spread the word to relatives.

Huntington unfortunately can lead to psychopathic behaviors so it’s a potential public health issue as well. I’m not sure it’s in the public best interest for people to be walking around unknowingly carriers. Telling someone “we have reason to believe you have a 50% chance of carrying Huntington, nhs will cover testing” might be reasonable as it does not explicitly point out a particular relative has it. Also do medical privacy rules hold after someone has died? There could be exceptions for information in the public best interest.