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.

I wasn't saying he didn't have capacity just that he might not have had.

I know, that’s what I’m asking, if he didn’t have capacity would he have had to have someone else appointed to deal with his medical stuff. Because if so, and he didn’t have someone appointed it suggests he had capacity.

How difficult. I would have assumed it would have been revealed by coroner in relation to her mothers death.

I don't tend to think that she should have a right to know, the idea of family counselling seems like best option but obviously didnt help in this case.

Would parents have to provide their genome to all of their children

That - well, a randomised half of it - is exactly what a parent does.

It's a difficult issue, but generally I tend towards the view that parents have responsibilities, their kids have rights.

Would something like this be possible - for children who are known about to be told something like 'there's evidence your parent has a heritable condition which you may develop or be a carrier for - do you want to be tested for it?'

I'm not sure that's without problems but at least it provides a bit of separation from the details of parent's diagnosis,

Wow this thread is interesting. It's refreshing to read a debate about a subject where there is genuine merit to the arguments on both sides. This is despite the very strong feelings all round; the personal experiences invoked and the tragedies involved in the case at the heart of the argument.

I'm currently pulled in both directions but following with interest.

Doctors have to be focused on treating the patient in front of them. If confidentiality is compromised you’ll find more and more people will defer or avoid medical treatment entirely for fear of their privacy being violated.

I’ve seen MRA’s make the case that all children upon birth should be genetically tested to ensure paternity as a matter of routine, would that from a feminist perspective be a gross invasion of privacy?

I don't see how this could be a good thing. What ought to happen in many cases is simply not always what should legally be required to happen.

I don't see how this is a feminist issue really, it would be about the same if the daughter had been a son with a pregnant partner.

I also find this kind of "I would have done x differently" thing difficult. So, she'd have had an abortion, and she now has a child. So the question might as well be, what does the child think or what will he or she think as an adult? Maybe the child would absolutely prefer to be alive with the risk, or even with the disease for sure? How far down the line does that responsibility go?

I would still point out you can't 'carry' Huntington's.... If you have the gene you will get the disease, unless you die before of something else.

You might not get the mental health issues or cognitive and behaviour difficulties. You might only get the chorea.... Are we really saying that we should put control measures in place for anyone who 'might' get dementia or any other mental health issues?

Please can we support these poor people and their families and their families without demonising them?

There surely is a right NOT to know as well?

"Maybe the child would absolutely prefer to be alive with the risk, or even with the disease for sure? How far down the line does that responsibility go?"
Wow. Good point.

Grappling back and forth with this.
Is part of it the timing? And how did she find out eventually?

Was the dad expecting the doctors to lie when she came to visit in hospital and say that he had something different? Or if he had carers were they not getting told the full picture? If he died would he have been able to stop the diagnosis going on his death certificate?

So many questions and no easy answers

If I've understood this correctly, she has only been tested for this now because she was accidentally told about her dad's condition. If anyone has a right to sue it would be her father, against the medical professional who presumably dropped that doozy into a conversation thinking the DD knew about his diagnosis. Otherwise, she'd still be none the wiser now, and have no right to know if her DF didn't want to share that information.

Would I rather have a father who I knew had Huntingdon's or a father who had actively sought to murder my DM? The former, I think but she has no rght to know about his diagnosis if he didn't want to share it.

If this is a feminist issue at all, it's because her father wanted to prevent her aborting a baby, which she would have done with the diagnosis. But that's about his need for control over his family, and a potentially affected DGC, not about her need for a diagnosis.

I don't see how she can win this case without setting a horrible precedent for patient confidentiality. I'd imagine many people would refuse to get genetic testing if they believed that all their family members would have a right to know the results.

@sugarplumfairycakes i was under the impression offspring cannot be tested unless the parent is first tested?

I dont know how i feel about it all but the NHS is not the one in the wrong, the parents are!! I dont know how in any circumstances you wouldn't be straight up about it. My best friend from schools family has the faulty gene, sadly for her they realised too late what was causing her Nans shakes and 14 grandchildren were already on the scene. The family is entirely open about it and were testing has been relevant it has been offered

Yes the only feminist angle I can see is that he deliberately withheld the information solely to prevent a woman having a termination.

Something tells me there is a back story here because he seemed certain his daughter would terminate if she had this information (and she later confirmed this belief is correct). That suggests they’d had conversations about this illness or similar illnesses at some point before she found out about the illness. I’ve never had any such conversation with either of my parents so I find it strange he would know what action she would take in a very specific circumstance.

I’m wondering if this woman wins her case how that would affect couples where one had the gene. Would they be legally obliged to tell their spouse incase they had children? Would the NHS be legally obliged to tell the spouse?

What if there were preventative measures she could have taken if she knew - got involved in a clinical trial (there is a lot of reasearch ongoing on Huntingtons including a possibly significant recent breakthrough in treatment)? Would that make it different. What if the medics discovered the father had insanity by reason of syphillis and there was a strong possibility he had infected his partner - should the partner be informed?

How do current sti partner notifications work? Are you allowed to say no you don't want people you've slept with to be contacted?

Lots of people have infected their partners with STDs they knew they had but didn’t disclose.

How on earth could the NHS possibly inform all sexual partners a person has had. I mean you couldn’t even know whether they had given you all the names. Or the correct names. It’s bonkers to even think that is an option. The NHS shouldn’t be responsible for informing people’s sexual partners of possible STDs.

Surely she is going after the wrong person. She should be blaming her father for non-disclosure, not the NHS.

Also, the daughter has a 50%chance of getting it, which means she has a 50%chance of not getting it. Where does that stop? Can we all sue the NHS because we have a one in xyz chance of getting Xzx disease?

Cheesecake factory partner notification is part of infection control. It's already happening.

Is it a legal obligation though? I understand it’s a service offered but are the NHS legally obliged to do it?

I have no idea. That doesn't change the fact it is feasible and clearly in common practice in many areas.

The NHS shouldn’t be responsible for informing people’s sexual partners of possible STDs.

Isn't notification already a thing for infectious diseases? If there is a measles outbreak, don't public health get involved?

what if the partner is sitting in front of you next to your patient and you know there is a 50 percent chance they have the same condition? Does a doctor owe any duty of care? What if there was a cure or treatment or even preventative treatment before you become symptomatic?

I think this case is going to throw up some very interesting questions and it isn't as simple as saying "of course she shouldn't have been told".

When the dad found out he had it he specifically told them not to disclose to her the nhs cant do it under those circumstances