MIL lied about genetic condition

Yes. Exactly.

Maybe she was doing the wrong thing for her own reasons. What has she said about it all? You’d be surprised what people convince themselves. Yes it’s wrong but I think the people making out she’s almost Pol Pot are wrong.

Why do you want your children to have a relationship with her?

Are you really telling op to cut her off? That’s just adding even more of a mess down the line.

It literally does.

The DH has made it to middle age without even realising his mum has this (or presumably any other) condition. The parallels with Huntington's don't apply here. There's loads of more minor hereditary conditions.

My mum's cousin developed very early onset dementia which turned out to be Huntingdon's. I was at uni at the time. When I found out, I told mum that we all had to get tested.

"No, there's no need for that. It's not in our family."

"Mum, it might be. You can't assume it came from his mother's side." I persisted in telling her that I'd be seeing my doctor.

Pause. "His mother got pregnant when Uncle Tam was dying of pneumoconiosis. That's why your grandmother fell out with her SIL - the last bairn in Uncle Tam's family wasn't actually Tam's."

I vaguely knew the bloke that she named as the father. He and his sons all died young.

There are times when family secrets can no longer be kept secret.

This is correct.

The law isn't the same thing as what is morally right and I think it's clear that people are responding more with what the moral thing to do is rather than the fact the law says the person doesn't have to tell their offspring they may have inherited life altering or life limiting conditions.

And laws are and absolutely should be up for debate.
That's how they get changed.

Just because something is a law, does not mean it's the right or the best thing or that it should not be debated.

There is a world of difference between what’s legal and what’s moral.

Maybe the parallels with Huntington's don’t apply. The fact is, he now has symptoms. If he had known he may have been able to seek earlier intervention or enacted lifestyle changes that would make a difference to the onset. It’s bloody selfish and I can’t for the life of me fathom why anyone would keep this a secret, especially when there are future generations involved.

It may be so legally. Morally is a totally different matter.

And I also developed benign fasciculation syndrome during pregnancy which caused all sorts of odd twitching. And can be hereditary. It’s also completely harmless and I’m not mad at my parents for not genetically testing me for it?

She has the legal right to withhold the information. You can't enforce the opposite!

All medical including Psychology has specifically advised not to discuss it with them until 18. I will like the rest of my family follow the medical experts advice as opposed to blowing children's live up when they cant avail of the specialist therapy or option of testing.

DH needed to know about this and so did you, in only in order to consider whether had any bearing on your decision to have children together. It would have been kind of MIL to tell him. Perhaps she was too scared or didn't want to think about it, but however understandable her behaviour was, there's no moral highground to claim here.

Like I said, I wouldn't have done what the MIL did, and I wouldn't recommend it to anyone who asked my advice. But I do think it is right and important that she has the right to make that decision. Especially for something that's comparatively minor.

Of course she lied, by omission. How would he know to ask ? The fact that he’s having symptoms of something wouldn’t automatically prompt you to assume it’s genetic.

Loads of reasons. Family dynamics. Mistakenly thinking you’re protecting people. Denial. None of that makes it right but those are some reasons.

She does have the right to make the decision, people in her position with a genetic disorder or illness should certainly not be forced by the law or anyone else to reveal it. But the fact is that young adults who are considering whether to have kids need to consider their genetic history, if it is available.
She only had to write down the name of the condition when her son was about 20 and say that it wasn't life threatening and he may not even share that gene, but she was telling him in case he ever wanted to look into it at some point in the future.

There is no way a law will be passed that violates the sanctity of medical privacy.

The op has no right to mandate information. That is fact and everyone saying oh but mil should have disclosed are in a parallel legal system that doesn't exist.

If you read my post I share the method used in Ireland to share a need to screening without breaching medical privacy.

Yeah, I wouldn’t call losing the feeling in your arm or the hearing in one ear, harmless.

We don't know that that's permanent though, it may well be treatable. The DH didn't put it together that he was suffering similar symptoms as his mum and she's known she has the condition for decades.

Funny but there was a thread on here a couple of days ago about the woman who crashed into the school in Wimbledon, killing two children. Almost every poster was calling for her private medical evidence to be made public in the interests of ‘transparency’ despite a CPS statement that robust medical evidence had been made available supporting their decision not to prosecute. Funny old world. Especially on mumsnet.

Not really the point though is it. We don’t know if it is permanent. But we don’t know that it’s not. Or that it could have been prevented had he known sooner.

Not really. Probably the same people saying it here.

You're right, it's not the point. It's the MIL's decision regardless, whether or not it's the decision we would take.