UK: Woman who inherited fatal illness to sue doctors in groundbreaking case

[muriel_volestrangler]

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.
...
The woman’s father shot and killed his wife in 2007 and was convicted of manslaughter. Two years later, doctors at St George’s Hospital in south London found he had Huntington’s disease and asked him to tell his daughter about his condition and her risk of developing it. But he refused to do so because he thought she might abort the child she was carrying. The doctors accepted his decision.

https://www.theguardian.com/science/2018/nov/25/woman-inherited-fatal-illness-sue-doctors-groundbreaking-case-huntingtons

I don't know what the current law in the US is; I suspect it would be that doctors can't tell children without the patient's permission. How often a sufferer decides to keep it from their children, I don't know. There's also the question of whether a similar ruling could apply to other conditions - few diseases have the same combination of symptoms not usually appearing until after you've have children, being invariably fatal, and purely inherited. But some share features.

[Princess Turandot]

1. Without the patient's approval, it would be a violation of federal law..

..under regulations referred to as HIPAA, which addressed patient privacy, among other health/insurance matters. The physician could face prosecution for a felony/risk losing their license.

Awful story. It's a horrible disease.

[3Hotdogs]

2. The point of the legal action is to change the law.

U.S. privacy laws could be changed, also.

[JayhawkSD]

5. I certainly hope not.

I don't want my doctor telling anyone, other than those I designate, anything about me. Period.

I might very well have family member with whom I am at odds who would use medical conditions against me. That is not really very unusual, and a doctor cannot know what family relationships may exist.

[Farmer-Rick]

3. Too many times doctors hide behind bad policy

To avoid doing the right thing....or to make money. I think there comes a time in life where you have to take a stand. Like not reporting a dying man is smoking cannabis in a state that outlaws it.

Too bad none of those doctors gave a shit about the mother and child. I hope she wins.

[JayhawkSD]

4. Wait a minute, "Hide behind policy?"

You really want a doctor to "do the right thing" and lose his ability to continue performing a profession that he spent eight years and probably close to $1 million dollars to qualify for?

You want a doctor to give what you consider to be help to one patient, and lose the ability to help thousands of patients that he might have been able to help in the future had his license to practice medicine not been taken away from him because he did what you consider to be "the right thing" but which is a violation of federal law?

Really?

And, by the way, there is no law in any state the requires a doctor to report that a patient is smoking pot.

[Farmer-Rick]

6. Oh yes, there are laws that require doctors to report patients if they are using cannabis

People in pain using cannabis get reported to hospitals and clinics. They are flagged so they can not continue to receive any other pain medications and sometimes other services are denied them as well. They are stigmatized in federal medical systems like the VA...it mostly happens in states where cannabis is illegal, but it also happens in states that have legalized cannabis. But of course this article is about the UK and I'm complaining about the US.

And yes, doctors should have allegiance to their patients over following the money or bad policy. The only reason our US messed up medical system exists is that doctors put up with it. They could have fought it, but chose to side with health insurance corps over their patients because they knew they could make more money. They could revolt right now against a medical system that drains every drop of wealth off the sick, suffering and dying. But they don't, because they believe a fair and equitable health care system would mean less money for themselves.

Most doctors in the US that I know got free rides through the military, other scholarships or had well to do parents. Only, recently have they joined the ranks of the overburdened with student loans. Oh they complained about it before, but it really wasn't so bad until the mid 90s.

And US doctors are protected from free trade agreements and aren't affected by free markets in foreign countries like the rest of us. That's why we have all those state by state license requirements and other obtuse regulations are still on the books. That's why Cuban doctors are prevented from working in the US. Keeping doctors flush with wealth is a way of making them go along with the horrid medical system we have.

[JHan]

7. This is a dicey one, but it shows why genetic screening panels are important,

More tests, which wouldn't have been considered before, should be seen as part of a regular check-up and this must be done with the patient's full consent and ancillary support through counseling.

Genetic testing options are the best way to approach this, where patients have the option of accessing a wide panel of tests where risks can be discussed. We can avoid commercial screening where data is just stored on a database and where consent should be emphasized for tissue banking and protection to DNA. So more extensive genetic testing with discussion of risks and the possibility of further tests for higher risk factors. Ethical considerations of who then is informed of these risks have to be considered as well ( Just think back to HIV e.g) The priority should be the patient and them accessing these options with ease and the necessary support.