MIL lied about genetic condition

Gosh really well I hope you don’t have kids!

Sometimes one act can tell you what you need to know about someone.

And she's kept this up for years and years too.

The advisement of screening is only possible due to being in a trial and part of it is giving significant family details. This is because the law doesn't allow sharing no matter what the circumstances.

Hopefully the trial will be identified as being appropriate and the process be rolled out.

I certainly wasn't calling for private medical history to be made public. I didn't see that thread.

Guess it’s one of the genetic myopathies or dystrophies. All the best to your family op, the gene therapy technology is coming along quite well so ask the consultants about that as it’s uplifting stuff. She made a shit decision. Wishing you and your kids all the best.

You don’t know her. Shit decision you mean.

When MIL had diagnosis she was “strongly advised” to tell her children so they could opt for testing

What a shit person.

Any remotely decent person would let their offspring know so they can decide whether to have genetic counselling and from that decide what options to take (if any options are available).

Basic decency.
Basic morals.
Basic responsibility.

I am sorry but her right to medical privacy over rides your right to know.

Nope.

Nope, Nope. Nope.

It may be her decision but it's an extremely selfish one.

I would be disgusted with her.

When I was 60, I was diagnosed with triple negative breast cancer. This can often be genetic in the under 60s, but because I had only just turned 60, I was advised to be tested to be on the safe side. I was negative for the three known genes, although they will inform me if they find any other faulty genes in the future. DNA research is moving at an incredible speed. I told both my adult DC all about this before I had the test. It would never have occurred to me not to! Although I was negative, my DD will be entitled to have routine breast screening from the age of 40 instead of the usual 50, due to my diagnosis.

But that is different to this case, in yours the patient has their medical privacy respected, but you and your children (& others) will be told that they are at an increased risk of breast cancer. I think both are ethically correct - a health professional should protect their patients right to privacy, but they also have a duty of care to other people and by disclosing a risk (without naming an individual) they also fulfil that. The OPs MIL didn't disclose that familial risk or ask a medical professional to do it whilst maintaining her privacy. I think that's wrong. However, genetic testing and ethics have evolved since she was diagnosed, and she probably wasn't given the same advice or options or support as she would be if diagnosed today.

Yanbu.
Furious wouldn't touch how I would feel and your mother should keep her "get over it" views to herself.
Awfully selfish, controlling behaviour.

I’m allowed to ask for more info for my opinion. Op doesn’t have to give it.

You're not being unreasonable at all.

To leave your husband in limbo for a further 2 weeks before telling him is awful. Also, had you known the option of genetic screening (PGT-M) could have been an option for you to consider when thinking about kids.

We don't need to know, it's not life ending, but, so far, it's left him partially deafened and without full use of at least one limb

It sounds debilitating

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.

Not really. Probably the same people saying it here.

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.

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.

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.

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

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.

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.