Woman who inherited fatal disease sues NHS

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?

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?

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.

@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

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.

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.

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.

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

"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.

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?

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?

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?

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.

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,

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.

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.

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.

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.

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?

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.

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.

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.

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.

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 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?