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Confidentiality v the right to know

(25 Posts)
watermeadow Mon 18-Nov-19 18:32:05

Do you think patient confidentiality is sacrosanct? I don’t care who knows my uninteresting health record.
Should someone have been told that her father had Huntingdon’s when she was pregnant and would have chosen not to have a child with a 50% chance of inheriting it?
Her father, who had killed her mother, did not want her told so doctors did not give her the crucial information.
I find this shocking and tragic. Of course she should have been told!

B9exchange Mon 18-Nov-19 18:41:38

Absolutely patient confidentiality is to be protected, it would be impossible to treat many patients if they believed what they told you would be shared without their permission. It should only be broken if needed to save a life, such as the driver who is unsafe to continue and refuses to give up. Or if a court order demands it for judicial purposes.

I agree the above case is utterly tragic, the responsibility in the above case would be on the doctor to try and persuade the father to tell her of the risk. If he still refused, there is not much the doctor could do. He would be opening himself up to litigation if broke his duty of confidentiality.

M0nica Mon 18-Nov-19 18:41:53

I would be very cautious about breaking rules on confidentiality, but I think this is a classic case where it should be.

I think a rule saying that confidentiality can be broken only where the diagnosis can directly and life threateningly affect another member of the family, as in this case, and I can think of others, would be acceptable.

notanan2 Mon 18-Nov-19 19:09:53

This is going to be an increasing issue as more people have genetic testing.

Doodle Mon 18-Nov-19 19:12:43

I am an absolute believer in patient confidentiality but I would find the OPs example to be an exception I think.

EllanVannin Mon 18-Nov-19 19:14:40

It's not always an advantage for patient confidentiality when records aren't permitted in certain court cases.

notanan2 Mon 18-Nov-19 19:19:24

I would urge people to separate the huntingtons from the murder.

Either he murdered her before his dementia was advanced or the dementia was so severed that it caused him to become agressive in which case it was a lack of appropriate care.

The murder is not relevant to the consent issue either way, tragic as it is.

Huntingtons doesnt predispose to violence any more than othet dementias. Less so in some cases when it physically debilitates

M0nica Mon 18-Nov-19 20:06:52

A friend of ours was ill for sometime and when his terminal cancer was diagnosed, it was found that the problem, which caused his final illness had a genetic basis that could be clearly traced in generations above him.

He had no qualms about making sure his children knew and could undergo screening. One is does not carry the gene. The other does and it had already shown signs that it was no longer dormant. They are now having regular screenings and prophylactic treatment and are unlikely to die as prematurely and tragically as their father did.

This is the kind of situation where I think patient confidentiality should be broken to save the lives of others.

BradfordLass72 Mon 18-Nov-19 21:24:45

As MOnica says, there is a difference between the confidentiality between doctor and patient - and the patient themselves keeping their illness a secret.

If you have something as deadly and heritable as Huntington's Chorea (Woody Guthrie was a sufferer, his son Arlo wrote about it) then you are duty bound, in my opinion, to tell your children.

Doctors can get around confidentiality if a patient refuses to admit a heritable disease, they simply advise the offspring of the patient not to have children. They do not need to explain why.

suziewoozie Mon 18-Nov-19 22:51:08

I’m pleased a case like this is going though the courts now ( and I suspect the GMC and NHS are) as the whole issue of confidentiality and inherited conditions needs a thorough review, especially with all the advances in genetic testing.

I believe Huntingdons was first suspected after the murder when he was detained under the Mental Health Act. Given this, it begs the question why his wishes that his daughter not be told of his diagnosis were followed when his mental competence was compromised. In addition the daughter is a patient too and as she is arguing, the NHS owe her a duty of care as well. It seems wrong to me that when there are conflicting duties of care that confidentiality should trump one persons rights automatically over another’s.

Also, there are already situations when doctors can breach confidentiality such as informing the DVLA or if they believe a patient is a serious threat to the safety of the community or to an individual.

My guess would be that whichever side wins, it might well go the Supreme Court which would be a good thing.

SueDonim Mon 18-Nov-19 23:47:53

It's an awful situation, very sad indeed. sad

If people thought their privacy was at risk, it could end up with them refusing to have tests in the first place. I knew someone who refused genetic testing because she didn't want to be in a position where she might have had to tell their children bad news. As it happens, she died of something totally unrelated, but testing is a minefield.

M0nica Tue 19-Nov-19 10:37:40

SueDonim*, so she was happy to let her children suffer the unknown prospect of finding they had, possibly, a fatal disease, where possibly early knowledge and monitoring could either delay onset or mitigate its consequences.

Sorry, but (polite) words fail me.

SueDonim Tue 19-Nov-19 13:22:29

Monica, it wasn't something where anyone would definitely develop the disease, it was that it was possible she had a raised-risk of a cancer gene. She kept her family life very private so I don't know what she eventually told her daughter when she got older. I may not have made it clear in my last post, but my friend never developed cancer herself and instead died suddenly of a catastrophic illness.

What I think I'm saying is that if confidentiality isn't respected then people may choose not to get tested in the first place. The right to know, of course, has long been an issue with sexually transmitted diseases and HIV.

M0nica Tue 19-Nov-19 16:01:39

There are times when if you open Pandora's box you have to live with the consequences. To refuse to open it because someone else to whom it may be a matter of life and earth might find out your status, strikes me as selfishness beyond belief.

sodapop Tue 19-Nov-19 19:42:30

I agree MOnica Huntingdon's is a horrible disease and I think an instance when issues of medical confidentiality should not apply.

Doodledog Tue 19-Nov-19 19:57:11

I think that confidentiality is absolutely sacrosanct, particularly in the age of the Internet, when information can be made more public than ever.

I agree that this case is nightmarish; but even so, I don't think the doctor should be forced to break her or his oath. It is not fair to expect a GP to weigh up the relative merits of telling someone something like that (not everyone wants to know anyway), or to make the judgement call about whose needs are paramount.

Maybe s/he could suggest a bank of tests, ostensibly for something else, and ensure that HC was among them? That way the patient would find out if they were carrying the gene, but need not know anything about it if not, and not know about their father in any event? I don't know how possible that is, but if it is it could be a solution.

suziewoozie Tue 19-Nov-19 20:09:23

Doodle that would be even more unethical. And as I posted above confidentiality can be broken - it’s not sacrosanct per se

Doodledog Tue 19-Nov-19 20:28:33

Maybe you're right about the ethical implications. It's such a minefield that it's difficult to pick through. Confidentiality is almost always waived when there is 'danger to self or others' anyway.

Whether or not confidentiality is sacrosanct already is not the point, though. The question is hypothetical - should someone be told? I'm inclined to think not, as it breaks the confidentiality of the father; but I'm very pleased that I'm not in a position to make laws about this sort of thing.

suziewoozie Tue 19-Nov-19 20:30:57

As I said above, it’s good it’s being tested in the courts.

Doodledog Tue 19-Nov-19 21:34:59

There is no need to keep pointing me in the direction of what you said above grin. I am musing on the thread, not debating directly with one poster.

suziewoozie Tue 19-Nov-19 21:44:10

Oh FFS Doodle I only phrased it that way in case you thought I was repeating myself.

suziewoozie Tue 19-Nov-19 21:45:51

So muse away and debate with yoursrlf - it’s hardly a popular thread. I’ll leave you to it

Summerlove Wed 20-Nov-19 01:28:00

That poor girl.So very sad.

Cases like this though will likely only end up with doctors refusing to treat members of the same family.

yggdrasil Wed 20-Nov-19 09:22:41

Remember though the daughter was already pregnant, and said she would have an abortion if she had known. This makes it doubly difficult for the doctors to break patient confidence. And did the father know about the pregnancy when he said she should not be told?
There are no winners here :-((

Doodledog Wed 20-Nov-19 09:45:02

It is a very tricky moral dilemma. If doctors can betray confidences then people who want to keep their records private will avoid getting medical help, and those in the position of the daughter will still be in the dark.

On the other hand, if a patient has a communicable disease, for instance, a doctor is legally obliged to isolate them (and anyone with whom they have been in contact?), which is done for the common good.

Arguably, telling someone that they are at risk of illness is also for the common good; but it opens cans of worms. Do we have a right to know if we have siblings, for instance? Or if a baby is adopted should the mother be able to keep its birth private? What about STIs? If they aren’t confidential, I can imagine that numbers of people seeking treatment will fall, but at the same time, those who have been exposed to risk could have complications if they aren’t treated. There are lots of examples of situations where there is a real dilemma, and it’s debatable whether they can be treated on a case by case basis, as the same rules should apply to everyone.