Woman who inherited fatal illness to sue doctors in groundbreaking case Watch

ax12
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I'd be interested to hear people's views on this - from that of a layperson and a healthcare professional.

"Lawyers are bringing a case against a London hospital trust that could trigger major changes to the rules governing patient confidentiality. The case involves a woman who is suing doctors because they failed to tell her about her father’s fatal hereditary disease before she had her own child.

The woman discovered – after giving birth – that her father carried the gene for Huntington’s disease, a degenerative, incurable brain condition. Later she found out she had inherited the gene and that her own daughter, now eight, has a 50% chance of having it.

The woman – who cannot be named for legal reasons – says she would have had an abortion had she known about her father’s condition, and is suing the doctors who failed to tell her about the risks she and her child faced. It is the first case in English law to deal with a relative’s claim over issues of genetic responsibility."

https://amp.theguardian.com/science/...vmRCRy1dxYKTgE
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ax12
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For anyone who is interested, here is a link to the GMC guidance on doctor-patient confidentiality:
https://www.gmc-uk.org/ethical-guida...nts-and-others
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Andrew97
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I kind of hope the case fails. “The doctors advised him to tell his daughter” is a crucial line in the article, but he refused.
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ecolier
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Good. When they lose (inevitably) the doctor-patient confidentiality principle will be enshrined in law.

Lots of reasons which immediately came into my head. I am sure there are plenty of others too.

What if there was (undisclosed) non-paternity, it will open a massive can of worms.

There are also (personal) reasons why a parent would want to conceal diagnoses to their children. It's privacy.

What about those who don't want to know, but their parents / siblings decide to test? If it's an autosomal dominant disease then there is a high chance they will also inevitably be indirected test.

Testing is not perfect - what about false negatives and false positives?

For those interested, there are plenty of resources online.
https://www.who.int/genomics/publica...s%20report.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564466/
http://www.genetics.edu.au/publicati...s-and-genomics
https://www.genome.gov/multimedia/slides/wgt/quaid.pdf
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FloralHybrid
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If this case was to go through, surely then people’s medical history wouldn’t be safe from their families if they didn’t want it to be, which defeats the entire point?

I’m not saying the father *should* have kept that to himself. But it was his decision to make.

Is it a common thing to go to the doctors, during pregnancy, and ask for your families medical history? Are you entitled to that?
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Last edited by FloralHybrid; 5 months ago
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ax12
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(Original post by FloralHybrid)
If this case was to go through, surely then people’s medical history wouldn’t be safe from their families if they didn’t want it to be, which defeats the entire point?

I’m not saying the father *should* have kept that to himself. But it was his decision to make.

Is it a common thing to go to the doctors, during pregnancy, and ask for your families medical history? Are you entitled to that?
You're not entitled to other people's medical history, but you are able to get genetic testing for yourself (although this wouldn't be available on the NHS).

The difficulty is also where you stop, if this case wins, and who makes the decision whether to tell the family. This case is a 50% chance of inheriting a deadly and debilitating disease which typically gets worse with each generation. What if the disease wasn't life-limiting? What if it was a 25% chance, or only boys would be affected and your child is a girl? What if it was an inherited increased risk of something happening, like cancer? What about if you didn't want to know, would you need to opt in/out to receiving information about a relative?

There are people who think that ethically this is open-and-shut in that the woman should win the case, but others would say the opposite.
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FloralHybrid
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(Original post by ax12)
You're not entitled to other people's medical history, but you are able to get genetic testing for yourself (although this wouldn't be available on the NHS).

The difficulty is also where you stop, if this case wins, and who makes the decision whether to tell the family. This case is a 50% chance of inheriting a deadly and debilitating disease which typically gets worse with each generation. What if the disease wasn't life-limiting? What if it was a 25% chance, or only boys would be affected and your child is a girl? What if it was an inherited increased risk of something happening, like cancer? What about if you didn't want to know, would you need to opt in/out to receiving information about a relative?

There are people who think that ethically this is open-and-shut in that the woman should win the case, but others would say the opposite.
Thank you for the info.

Actually, I was leaning a lot more towards she shouldn’t win the case. Your families medical history shouldn’t be something you’re entitled to, although I understand and agree with the option to get genetic testing for yourself. Maybe this should be available on the NHS..? It’s tricky, I can see the argument for why it raises ethical concerns that your family can withhold potentially life threatening conditions that you’ve inherited that could affect your children.
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ecolier
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(Original post by ax12)
...if this case wins...
They won't. So it's OK.

This case is literally the first pillar of medical ethics = autonomy.
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ax12
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(Original post by ecolier)
They won't. So it's OK.

This case is literally the first pillar of medical ethics = autonomy.
Yes, but there are situations in which you can disclose people's medical information without their consent. I think it's an interesting discussion to have, particularly when there are people who think it should be allowed in cases like this.
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ecolier
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(Original post by ax12)
Yes, but there are situations in which you can disclose people's medical information without their consent.
Only in circumstances that's to protect public interests (not private / individual), and only then it's very limited disclosure.

I think it's an interesting discussion to have, particularly when there are people who think it should be allowed in cases like this.
It is, but it's doomed from the start.
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username521617
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"I would have aborted you if I knew about my father's disease!" says the loving mother to her daughter.

Her father should have told her. It was his responsibility, really, as he would have known the doctors wouldn't have been able to tell her. I think this lawsuit will fail.

Although, allowing family members to access information about hereditary family illnesses before having children might be a good proposal.
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claireestelle
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My dad chose not to tell my family when he was experiencing signs of a condition that I have a 50/50 chance of inheriting, a condition which partially led to his death at 36. (Yes I was devastated when my family told me that I could have it and deciding to get tested as a teenager was difficult but I ve never been angry at dad for trying to protect his family one last time as I think the father in this case was trying to do) .
Telling your child that they could have the genes for a condition that you re dying from is unimaginably a difficult decision and I d always respect if someone decided not to tell them.
I expect the case to be thrown out ,people have a right to keep their medical history private after all. (She would have had a right to ask for her dad's medical records after her died though I believe).
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SoulfulTwist
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Patient confidentiality is very important and cannot be dismissed.
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Gofre
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As awful as it must be for the woman to learn this after her child's birth, I hope this gets laughed out of the court at the earliest opportunity.
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squeakysquirrel
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I have had patients with HIV/AIDS who refused to tell their partners that they had it. We had to respect their wishes no matter how much we disagreed. This was in South Africa in the 1990s. I think it is now a criminal offence but we could do nothing at the time.

This woman will lose the case. The father refused to tell her. If he had not been of sound mind you would perhaps have had a cause to tell the daughter but the awful thing about huntingdons is that the mind is normal and the body fails horribly.
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ax12
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(Original post by Gofre)
As awful as it must be for the woman to learn this after her child's birth, I hope this gets laughed out of the court at the earliest opportunity.
Interestingly it was already struck out in 2015, but the court of appeals overturned that decision and have allowed it to go to court.

Edit, this is why:
"In the appeal, the UK General Medical Council's 2009 guidance on doctor-patient confidentiality was central to the decision. It states that a doctor should disclose information 'if a patient's refusal to consent to disclosure leaves others exposed to a risk so serious that it outweighs the patient's and the public interest in maintaining confidentiality'.

Lord Justice Irwin ruled that this could mean that a duty of care existed: 'If the clinician conducts the requisite balancing exercise, and concludes that it falls in favour of disclosure then a professional obligation arises.' "
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Bang Outta Order
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(Original post by Andrew97)
I kind of hope the case fails. “The doctors advised him to tell his daughter” is a crucial line in the article, but he refused.
No. The case is literally about the doctor's responsibility to inform them of a disease, in other words suing him for not, you know, doing his job
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Underscore__
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(Original post by Bang Outta Order)
No. The case is literally about the doctor's responsibility to inform them of a disease, in other words suing him for not, you know, doing his job
But that responsibility doesn’t exist in law, what does exist is a duty to keep medical records confidential. The doctor did their job in the way their professional standards tell them to.
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ThomH97
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Firstly, this whole story is a mess. The doctors and the dad only found out because he shot his wife dead, and she would have had the baby anyway. Unless there was a duty on the NHS to screen the population to find their genetic defects (and there isn't), the NHS has not done anything wrong.

The father has a duty to his family, though he's killed his wife so that puts paid to that. Perhaps the government could set up some department to actively find people with debilitating genetic traits and ensure their family are aware, but that's outside the NHS and would need to be properly thought through.

If anything the woman should sue her father, because it was his choice (in law and in practice) to tell her or not. And from the article, he deliberately didn't tell her because he knew it would be an important factor in a major life decision. This isn't merely the NHS' principle of "We don't disclose our patients' details", it's a choice made because of the probable outcomes.
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