Woman who inherited fatal disease sues NHS

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.

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.

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.

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.

I'm on her side on this one.

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.

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

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.

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.

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.

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.

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

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.

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.

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