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.

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

There's no such thing as "family medical information" beyond what each individual might have gathered from their own family history.

And of course this situation could apply to a man.

Like others, unless everything that ever happens to a woman must have a feminist angle I'm struggling to see the feminist angle here.

If we were to get into an NHS obligation to tell for medical reasons then the NHS also simultaneously have a obligation not to tell for medical reasons.

The former relates to physical health and the later relates to mental health reasons, both of which could have a significant impact on a patient. How do the NHS decide who should be told and who shouldn't be told for someone's best interests?

It's an impossible situation if there were to be a legal responsibility placed on the NHS. The NHS could be sued for telling as much as they could be sued for not telling. If they got it 'wrong' for the wrong person.

As others have stated, I do think it comes down to the father being the one who withheld information rather than the NHS for this reason.

And its why genetic counselling exists, which is part of an NHS process in the way it does rather than simply telling children.

If the court rules in favour of this woman then having control over whether you are generically tested passes from the individual to the state and ultimately then on to private commercial interests as they find ways to exploit the state's obligation to tell. That's a massive loss of personal automy and power. To the point of dystopian nightmare.

Tom Cruise's 'Minority Report' is a good point of reference to get you thinking of free will versus determinism. It examines whether free will can exist if the future is set and known in advance. And then how government and media act in order to 'protect' other citizens from those perceived as flawed or potentially undesirable.

The whole subject very quickly gets close to eugenics when the pieces start to drop into sequence...

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

It really isn't a grey area. She has no right to be told. I can't see how a court would find for her and I hope it doesn't.

What about the implications for insurance? If you have a known genetic disease within the family will insurers demand a declaration? And will this affect the premiums and opportunities of those people? Would it be a problem if you wanted to buy a house with a mortgage?

Insurance is already an issue that gets discussed during counseling prior to a test for the gene - if you have a positive test you may struggle to get life insurance. My stepsister has HD in the family (she is thankfully negative for the gene) but it was a reason she didn't test for ages - she was scared she'd not get the chance to get a mortgage. I think it might have implications for some jobs too.

Taking that test is a really big deal and such a personal decision. It has to be done carefully and sensitively. Agree with the people saying it'll just push HD back into the shadows if this ruling goes through.

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?

Because having children is primarily the responsibility of women. And is viewed as such by society.

To put it in its most blunt form women and men are judged differently from walking away from their children. Women and men are viewed differently in terms of their caring and nurturing role.

Men are not framed as harshly as women as they do not have the same level of responsibility placed upon them.

If a father has a genetic condition he fails to tell a mother, it will be the mother that lives with the consequences not him, if he just decides to fuck off.

The fact she didn’t tell her sister (who I believe was also pregnant) means I don’t see how she could possibly win this case. I agree with other posters that it would have major consequences for the nhs and lead to a fundamental shift in confidentiality away from the patient with the condition and move the focus onto what’s best for their wider family. This simply isn’t workable and would be very damaging in the majority of cases

There are two issues being conflated here.

It is absolutely a feminist issue in regards to the fact the father wanted to exert some semblance of control over his daughter’s pregnancy- like many other instances around the world - and what he did to her was, in my opinion, utterly selfish.

However it is not then the responsibility of the NHS, and doctors involved (actual humans who are beholden to rules regarding such things) to don a feminist super cape, swoop in, and break confidentiality in order to provide this woman with the informed decision making she in hindsight wishes she’d had.

Father’s behaviour: feminist issue.

Legal case: potentially the most upheaving decision regarding patient confidentiality and rules surrounding it.

If a father has a genetic condition he fails to tell a mother, it will be the mother that lives with the consequences not him, if he just decides to fuck off.

It will be the child that lives with it and just because some men fuck off it doesn't mean that all men do.

If women are given the right to access an individual's medical history because it might affect their decision to have a child then men absolutely have to have the same right. They have the right to choose never to become fathers if they fear passing on a genetic disease.

I hope this is a moot point though and that this case fails in court.

It’s such a heartbreaking case.

It is complex with a lot of implications. I don’t know what the right answer is however it is Probably a good time to test this and face up to the issues.

What a hideous situation.
But I do not think she will, or should, win.

Something similar, though not identical, happened to me.
My brother learned he had 'some genetic thing' during IVF testing when he and his partner were trying to conceive. He didn't share anything about it with us, his siblings at the time. In fact, I think it was mentioned only in passing years later, by my mum, very casually.

I married, quickly got pregnant, and remembered vaguely about his 'thing', so asked for details.
It turned out to be a chromosome problem that would affect pregnancies through high risk of miscarriage, or live birth of a severely disabled baby with a very rare, life limiting genetic syndrome.
And I was at high risk of also being a carrier. And I was already pregnant.
I tested, and indeed I found out I had the carrier status too. So then I had amniocentesis and eventually, mercifully, had the all clear for my first child.

At no point during the first, scary, secret months of my pregnancy did I blame the NHS for not disclosing my brother's status. You can bet I was frustrated with my brother though. He would have been strongly advised to warn his siblings, but just didn't bother. Apathy, inability to imagine the implications for others.

After I discovered my status, I encouraged my parents to get tested, we identified which side of the family it was on, and everyone potentially affected was informed so they could consider their own reproductive choices where relevant.

This is an ethical dilemma, but it belongs to the patient who is diagnosed. The obligation is between them and their family members that may be affected. It does not lie with the NHS.

Sadly, there is also now a diagnosis of Huntington's disease in a family member (by marriage). And it is still my opinion that the obligation to disclose lies with the diagnosed patient to their loved ones. Not with the legal compulsion of the patient's doctors.
I do think the doctors have an obligation before testing, to explain to the patient that the ramifications are more than just their own, and that with knowledge comes the burden of responsibility, but that is all.

I can still see this impossibly horrible situation as the worst of dilemmas though.

I wish the money and attention for this case were being ploughed instead into funding for research or care. People are all too concerned over the ethical questions of genetic testing. My father, who is in later stages, has once again been refused Continuing Healthcare, despite scoring highly his PIP application. For such a terrible disease why is he even being assessed? There is no care pathway, even the specialist care homes struggle. He is a round peg in a square hole.

I’m not a lawyer but I don’t think if she won that that would necessarily open the floodgates re all inherited conditions. The judgement would turn on the circumstances of this particular case, not all cases of inherited conditions nor necessarily all cases of HD,

Second point - Doctors can breach confidentiality. If you are unfit to drive and refuse to tell the DVLA , the doctor can do so and indeed has a duty - there is specific GMC guidance on this. Similarly if, for example, during a session with your psychiatrist you make a threat of violence towards a specific person, or group,of people, the doctor can inform the relevant authorities.

I do have an inherited disease - not anything like HD but life changing. My mum was diagnosed after I had my dd- I decided not to have anymore. Sadly she has it ( also 50/50) but much worse than me - it breaks my heart. I would never ever ever have forgiven my dm if she hadn’t told me - at least I don’t have more children to be broken hearted about

Any money spent on this wouldn’t go otherwise to fund our completely fucked social care/ continuing care system - only political change will do that

This is a shoddy piece of reporting.

Whatever is reasons for not wanting to tell her, her being pregnant, etc, those will not have been the reasons that the NHS didn't tell her. That comes down to simple confidentiality. He didn't want his diagnosis shared, so it wasn't. The inclusion of his reasons are to create an emotive piece but they falsely represent data protection laws.

I feel desperately sad for her and it is a tricky one because it's not just information about him but also about her. But I worry about the consequences of a case like this. And her poor daughter - to grow up knowing her mum wishes she'd never been born. Her mum wished it so strongly she went to court and sued the NHS. I know it's not that simple but that's how I'd feel about in, in her child's position.

So sad all round.

I’m not a lawyer but I don’t think if she won that that would necessarily open the floodgates re all inherited conditions. The judgement would turn on the circumstances of this particular case, not all cases of inherited conditions nor necessarily all cases of HD

It could not turn on just this case.

Radio 4s Moral Maze has explored the morality of the decision this evening. An interesting listen.