Woman who inherited fatal disease sues NHS

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?

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.

@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?!

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.

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.

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.

@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.

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.

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

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

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

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.

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?

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?

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

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?

I hope she doesn't win because of the unintended consequences if she does.

It would mean the NHS has an obligation to tell the children of everyone with a genetic disease that they might have it.

The potential fall out from that is huge.

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?

What if someone does not wish to know something like this but the NHS come barging in. Why about their right to not know and enjoy life without having the spectre of a disease hanging over them? Not everyone would want to know like this woman, for exactly the opposite reasons.

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?

Would the NHS then come under state pressure to discourage known carriers of diseases from having children? Or would there be demands on the NHS to provide NHS funded ivf where embryos have been screened first? Or will there be a whole new private industry for someone to cash into, simply as the result of this court case?

And what about the social stimga of parents who decide to have children even if they know they potentially are carriers? How will society treat them in the long term? Will it pressure politicians to defund certain inherited diseases through the NHS because the public think its somehow 'selfish' to pass on these diseases and the cost of them to the taxpayer 'because they knew what they were doing'?

That's just off the top of my head. If I thought about it for a while I think there would be other concerns.

I think it's a massive subject which has huge ramifications for all of us, not just those who carry diseases.

Can of worms doesn't cover it IMO.

www.telegraph.co.uk/news/uknews/law-and-order/12011350/Tania-Clarence-serious-case-review-into-mother-who-smothered-three-children.html

How does "first do no harm" fit in? By not telling you are harming, passively but you are.
If a person is at a sexual health clinic because of chlamydia and they say they are having unprotected sex with person B, who the clinic know has another sti, an untreatable one, do they have a duty of care? Obviously the first action would be to convince b to tell. But if b refused?

A few years ago there was a manslaughter case where a woman had a breakdown and killed 3 of her children. Children had a genetic disease they discovered after all 3 of them were born. I think they had another child who didn't have disease.
I would definitely like to know. It gives you an option to make an informed decision about having a biological child.

No one can be compelled to have these tests. What if the Dr says to a patient "we think you may have HD, we need to test for it" but the patients doesn't want their children informed and so they refuse to have the tests? Are you going to have a law that forces patients to be tested, against their will, so that their children can be informed?

Where does this end? Would you compel drs to tell partners of.patients who have tested positive too? If yes, is that a spouse or bf/gf? Long term? Short term? Ons who may have become pregnant?

Exhausted Flamingo

I totally agree with everything you say. I have even known people not being offered/gently talked out of the test by professionals as they believe the person's fragile mental health would not cope with a positive result. It is a very personal decision that is different for everyone and no-one should be judged for the decision they make. I am so sorry to read about your situation and you seem like a courageous person making the very best of the shit hand you have been dealt.
There is absolutely a right not to know as well as a right to know.
The only people who are going to benefit from this case are the lawyers.

In this kind of scenario duty of care to female partners of childbearing age and DC of the person with the condition outweigh confidentiality considerations IMO.

Confidential from the general population sure, but as a biological child you should have the right to be told.

So, day she had been informed but decided to continue with her pregnancy. Should her child have the right to sue her for putting them at risk of developing a genetic disease?

If this is allowed it will end patient confidentiality simply because someone will always be able to make the case that they have potentially been harmed by not having information about someone else's medical condition.

This is such a can of worms. If she wins this case then where does it stop? Just with HD or any genetic disease?

If you think that your parent might have inherited a genetic condition could you force them to have testing so that you, as their child, can be informed?

My husband's family have a history of breast cancer. The only surviving member was offered genetic testing to see if she carries the gene but she refused to have it done. We were concerned about our children being at an increased risk but we've been told that they will not test our children unless it's proven that the faulty gene is in the family, which we can't do because this relative has refused testing. So those of you arguing for this case, should this type of genetic testing be compelled?