Woman Who Inherited Huntington's Disease Sues Doctors (bbc.com) 142
AmiMoJo writes: A woman is suing a London NHS trust for not revealing her father had been diagnosed with Huntington's disease before she had her own child. She only discovered he carried the gene for the degenerative, incurable brain disorder after her daughter was born. The woman then found out she too carried the faulty gene, meaning her daughter has a 50% chance of having it.
The story is tragic. In 2007 her father murdered her mother and was found to have Huntington's, which often results in confusion and violent behavior. She was already pregnant at the time and her father asked that she not be told as he feared she would abort the pregnancy. Doctors were in a bind, with doctor-patient confidentiality on one hand and a duty of care on the other. The woman is arguing that in cases of serious inherited diseases children should have a right to know. She says if she had known she would not have had a child, who has a 50:50 chance of also having Huntington's and will one day have to look after her confused and possibly violent mother.
The story is tragic. In 2007 her father murdered her mother and was found to have Huntington's, which often results in confusion and violent behavior. She was already pregnant at the time and her father asked that she not be told as he feared she would abort the pregnancy. Doctors were in a bind, with doctor-patient confidentiality on one hand and a duty of care on the other. The woman is arguing that in cases of serious inherited diseases children should have a right to know. She says if she had known she would not have had a child, who has a 50:50 chance of also having Huntington's and will one day have to look after her confused and possibly violent mother.
Undeniably tragic. (Score:2)
But why is this on /.?
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Must be some SJW angle.
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Medical science. As we develop the ability to test for these kinds of diseases these issues will come up ever more frequently, and we should be thinking about how we intend to handle them.
Genetic privacy is a hot topic right now because genetic testing is getting cheap and accessible. It throws up ethical issues - if you find some genetic issue in one person that might affect others in their family how do you balance privacy and the duty of care?
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if you find some genetic issue in one person that might affect others in their family how do you balance privacy and the duty of care?
The answer to that question is simple. Humans have an inherent right to privacy. There must be a compelling interest to violate that right. The impact is strictly between two individuals which lacks sufficient compelling interest to violate the rights of an individual. The instances where it is a compelling interest to violate the privacy rights of an individual occur when it is known that it can impact multiple individuals such as in the case of communicable diseases.
The information in question is between
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Because Genetics.
Wishing I hadn't spent my mod points on another article...
Rules? (Score:4, Interesting)
Not sure how the privacy laws work in England, but in the US you have no right to anyone else's medical records, including your family, excepting anyone you have power of attorney for (spouse, children, etc...)
So unless instructed otherwise, in the US at least, the doctor's couldn't tell the daughter.
Re: Rules? (Score:2)
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Not sure how the privacy laws work in England, but in the US you have no right to anyone else's medical records
The flip side of "rights" is duties, which is what this case is about. The doctor (1) arguably has a duty of care to the woman in question since the woman was under the doctor's care, and (2) has a duty of confidentiality to her father. Is it a slam dunk that the second duty outweighs the first? The law says there are three factors to decide whether it's a slam dunk... https://www.1cor.com/london/20... [1cor.com]
(1) If you can't reasonably foresee injury to the woman, then it's a slam dunk that confidentiality wins. (
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The laws may be what they may be, but this is the same UK doctors and government which insist they have the right to decide when to euthanize your child and whether you can seek additional medical care for them. Agree or disagree with those past decisions, the assertion is they are the knowing ones capable of deciding best to the point that you only get to observe the outcome. But as soon as the nanny fails to intervene intelligently, suddenly it's because civil liberties and individual autonomy trump all
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All the doctors had to do was say, "We highly recommend you get a screening for genetic abnormalities."
I could see that as being a plausible work-around the privacy laws in this case. The doctors aren't allowed to tell the patient directly, but there's nothing stopping them from ordering a genetic screening test for a different patient, as long as they don't say "we're ordering this screening test because of your dad."
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How about the case where someone is in therapy and says something which makes the psychiatrist think they are a danger to other people? While the content of the sessions is usually private is there not a duty to protect other people if they appear to be in imminent danger?
Certainly in the UK they can inform the relevant people, usually the police, that they think someone is at risk because of something said in a private doctor-patient session. The question is how much risk Huntington's is. Her father murder
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Exactly! (US MD here) If she wants to sue to change the law in a Tarasoff [wikipedia.org] "duty to notify" type of case then sure, sue away as it poses an interesting question. Does she have a right to know. If she is suing for $$$ (she is) then it fails 2 of the 4Ds of malpractice (if that is what she is going for):
Duty: The daughter and the patient did not have a doctor patient relationship
Dereliction: Standards of the time, and probably still would dictate the privacy of the actual patient (the dad) would win over the
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she does have right to medical issues that could be passed down to her.
Not when the disclosure directly breaches another patients privacy. It's that simple. Her father said she was not to be told of his diagnosis, so doctors had no standing to tell her - she needed to discover it herself via another path.
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Not when the disclosure directly breaches another patients privacy. It's that simple.
It's not that simple at all! Both the Royal College of Physicians and the General Medical Council - the two relevant professional bodies - believe there are cases where duty of care for other people outweighs duty of confidentiality to a patient. https://resolution.nhs.uk/2017... [resolution.nhs.uk]
In the legal battle, both parties agreed that two of the three conditions were met for saying that the doctor had a duty of care to the woman to inform her - (1) the doctor could reasonably foresee harm to the woman if she were not
Violent??? (Score:4, Interesting)
I know 5 people with this disease, and none are violent. It's hard to be violent when you can barely control your movements. What a weird summary.
Re:Violent??? (Score:4, Informative)
High Stakes Gamble (Score:3)
Re:Violent??? (Score:4, Insightful)
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I know 5 people who caught influenza and they are all alive and were simply bedridden for a week. That doesn't at all mean that it is an illness that can be brushed off.
Unless you watched those 5 people closely all the time, how do you know they were not violent? What's the number one impression you hear about violent offenders? Neighbours saying "He was always pleasant and not a violent person at all!" Incidentally I was told the 5 people who had influenza were bedridden. I found out a few months later one
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Child's complex (Score:5, Interesting)
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It wouldn't bother me if it were me. If it did happen, I wouldn't have been around to care. If I'm around to care, it obviously didn't happen. If the parent were being abusive (possibly constantly reminding the kid that he was an "accident"), THAT would be the problem, but not the fact that the parent didn't want to deal with a debilitating disease (and didn't want the kid to deal with it, either.) If the parents otherwise did a decent job raising me and possibly mentioned this fact, I don't see how it
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Re:Child's complex (Score:5, Interesting)
Just imagine the complex this child will have when they find out their mother sued doctors saying she would have aborted the pregnancy had they told her.
Not only that but the mother didn't tell her sister about Huntington's in the family when she got pregnant, fearing that the sister might have aborted the pregnancy as well.
I'm thinking that this will sink her case. She demanded that she should have been told but then also withheld this knowledge from her sister. If she thought this so important then she should have told her sister. Her finding out of her father's disease was a mistake, she should not have been told under current rules. I believe this to be a good policy as this should be something handled within the family. It was handled in the family by keeping quiet on this, both by the grandfather of the child in this lawsuit
and by the mother not telling her sister.
There's not just one child that will have this complex, there's now two. Both of them will have to ponder if they would have been born if their mothers were told about this disease in the family, and they will both have to ponder if they should get themselves tested for the disease.
Re:Child's complex (Score:5, Funny)
Idiot child suing parents for being born. [ctvnews.ca]
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Just imagine the complex this child will have when they find out their mother sued doctors saying she would have aborted the pregnancy had they told her.
They'd probably wish they were aborted when Huntington's kicks in around 30.
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You think this child will have to wait for this bomb to drop to develop that complex? I have a hunch the child will find out WAY before being able to even remotely understand the complex idea behind it, simply by how the mother will treat the child.
don't tell me what I can't do (Score:2)
If it was my life, i'd rather live with 50/50 odds of early and horrible death than not live.
However as a parent, i would obviously not want to bring a heavily crippled child into this world, for everyones sake.
If I was the grand parent, I would not want my genetic legacy to die out above all, because then what was the point really? Even a shitty genetic legacy is still a legacy.
Then again, gattaca. The human spirit overcomes much more than the average result of medical science might lead one to believe is
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I too inherited the excessive white space gene.
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I too inherited the excessive white space gene.
"This gene intentionally left blank"
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The obvious question is... (Score:2, Flamebait)
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Well, aren't involuntary events of nature usually called "an act of god"?
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Literary flourishes are not evidence.
She needed to sue her FATHER... (Score:3)
...for the harm done to her by exercising his right to withhold that information from her. Not the NHS. Or is she not interested in action against the guilty party, just the institution with more money?
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TFA doesn't mention money. There might be a nominal amount but in the goal here seems to be to set a precedent for how doctors should treat this kind of information. In other words it's altruistic, she wants to make sure other people in similar situations are informed.
Re:She needed to sue her FATHER... (Score:5, Insightful)
Careful what you wish for.
What this essentially means is that the interests of a third party trump the doctor-patient confidentiality. I don't have to show examples why this is a BAD thing, do I?
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The British legal system tends to avoid that kind of very high level principal and instead look for more subtle, nuanced decisions that define when it is appropriate to inform a third party. Assuming they decide it is at all appropriate, that is.
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Or is she not interested in action against the guilty party, just the institution with more money?
If it were just about money it would make sense to sue the father. On the other hand suing an institution (especially a government one) is a way of creating awareness and pressing for policy change (even legal change).
Nowhere does it say she is suing for a sum.
If this is allowed the doctors will be stuffed (Score:3)
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In my opinion (Score:2)
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Far western medicine - exported (Score:2)
Wow - US healthcare practices really are catching on. Frivolous law suits are a key tenet of American medicine.
Nothing stopped her from getting tested (Score:2)
Nothing stopped this woman from having medical tests done on herself prior to pregnancy to find things like this.
People need to stop blaming others for their own shortcomings or bad decisions.
Life can be difficult. Strap on your helmet and deal with it.
Or a cure is developed (Score:2)
It is tragic. Maybe ...maybe a cure is found before she needs it.
Blame the bureaucrats (Score:2)
When stuff like this happens, always lay the blame squarely at the feet of highly overpaid bureaucrats who have no medical knowledge whatsoever.
Too effing bad... sorry (Score:2)
Health records are confidential for a reason.
The doctors have no obligation to reveal anything about a patient to anyone else unless the patient is *unable* (not unwilling) to relay that information to his or her family. The fact that her dad may have had reasons he might have truly believed were valid for not letting her know are irrelevant. By not telling her, the bastard selfishly manipulated his daughter into doing something other than what she may have chosen to do if she had known, just to appea
Potential parents could get their OWN genetic test (Score:2)
Put a flag in everyone's files. (Score:2)
Put a flag in every medical history saying "genetic tests warranted". This flag could go up because signs of a genetic disease have been spotted, or because someone in the immediate family has been conclusively shown to suffer from the condition. The most important bit that decouples this from privacy issues is that the patient is not told why they are being recommended to take a genetic test, nor what is being specifically sought. It could be something as innocent as "you appear to carry sickle-cell trait,
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how about before?
Re:Eh (Score:5, Funny)
It is hard to know when you are about to get pregnant. Just ask Mary.
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Re:Eh (Score:5, Insightful)
If you are that concerned about genetic diseases ...
The issue here is that she didn't know she should be concerned because the doctors, who knew she had an extraordinarily higher than average risk, didn't warn her.
She is claiming they had a duty to warn her, and that she (and her child) were harmed by their failure.
Re:Eh (Score:5, Informative)
No such duty of care exists in UK where the information comes from another patients records and is not a reportable disease (ie HIV, gonorrhoea et al, essentially public health concerns). Her fathers medical records are not hers, and she has no entitlement to them - and without either a court order or permission from the patient, the doctors can not divulge that information to her.
This case is bullshit and a money grab.
Re:Eh (Score:5, Insightful)
No such duty of care exists in UK ...
I'm not saying it does.
I'm explaining that, in her lawsuit, SHE is claiming that it does.
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I was agreeing with you.
I don't think it is so simple. (Score:2, Troll)
Law aside, I can see a clear conflict of moral values that are of the sort that really divide people and evoke strong emotions.
I am not going to weigh in on that. I am just going to say that we have a means of making these issues vanish. With tools like CRISPR in our hands, the road to curing genetic diseases like these has never been shorter. The more economic focus we can put on the development and utilization of these tools, the sooner we can put an end to tragedies like these.
Re:I don't think it is so simple. (Score:5, Informative)
Yes, it is that simple - doctors have to abide by the law, and the law says she is not entitled to her fathers medical records without either permission, a court order, or a public health reason. You cannot have wishy washy vague rules determining these things (everyone has a different concept of what the moral or ethical situation is here - its not clear cut at all), you need to have a concrete set of rules and those rules are the privacy laws involved here.
If a doctor was to violate those privacy laws, they would face a GMC tribunal (itself costing around £100,000 to defend) with the very real threat of being struck off, and a private lawsuit from the father for invasion of privacy.
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And her father is ethically entitled to confidentiality from his doctor. They can't tell the daughter that she's at risk without giving away how they know and violating his privacy. It's an interesting dilemma, both ethically and legally.
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You kinda miss the entire point of my post....
Laws are concrete, everyone in their jurisdiction has to abide by the same laid out rules - morals and ethics are not, they differ from person to person. I for example see no ethical reason why her need to know should override her fathers right to privacy - what else does she feel she should be entitled to know about her father?
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No she isn't.
You have no right to information I posses about someone else.
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They could tell her she was at risk for Huntington’s disease without tell her it was from her father.
I am not a lawyer. But this case does not seem so simple to me.
Genetic testing is a new. It is not clear waht the rules are.
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They could tell her she was at risk for Huntington’s disease without tell her it was from her father.
It's a genetic disease. It's not like this is something that can be contracted from the general population. There's a small finite number of sources. Telling the daughter that she could have the disease would be violating the privacy rights of both the father and the mother.
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Legally that is very very very dubious, as its a "soft" leak of private information.
There are plenty of reasons for being violent, with only a very small minority of those reasons being a diagnosable inheritable disease - such a wink and nod approach would not be defensible by the doctor at a tribunal.
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Tools like CRISPR-Cas[x] offer an option if you're willing to have ten patients and have one be partially successful and nine horrible failures where DNA cutting hit the wrong spot, causing wildly random effects.
It's far more destructive than selective breeding of humans. And we generally treat eugenics as too destructive to be usable on humans. Which is why the only cases of this sort of gene editing on humans has been used (to our knowledge) in externally fertilized embryos, where most of the samples fail
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I'm a nutter? Really? Are you just trolling me?
Have you done any reading [npr.org] at all?
I realize that I am attempting to give a reasoned response to a post that literally did nothing but sling poo.... ...but scientific advances are precisely what has elevated humanity from stone-age nomads to moon-walkers. We can have real-time conversations that span the entire globe. We can harvest organs from dead people and put them in living people who use them to keep living. We can make it cold inside when it is hot
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Binary dude is a troll.
However, there are some problems with CRISPR. It's not really an "editing" technique. CRISPR allows you to snip DNA in a very well controlled place. If you want to get rid of something, that works pretty well.
If you want to add something, with standard CRISPR you'd make sure the chunk of DNA you wanted to add was floating around, and sometimes it would get incorporated. Sometimes not. Sometimes something else would.
Those kind of "off target" effects can be a bit of a problem. If you
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Seriously dude, don't feed the trolls. Foe list and move on.
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No such duty of care exists in UK where the information comes from another patients records and is not a reportable disease
Then perhaps the intent of the lawsuit is "Huntington's ought to be made reportable, as violence by affected 40-year-olds is a public health concern."
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And that would require a change in the law, which cannot be enacted through the English court system as only Parliament can enact or change laws - not even the Supreme Court can strike a law down, only note its incompatibility with the Human Rights Act in some specific circumstances.
Suing the NHS in this regard won't change whether Huntingtons is reportable or not - and why stop there? Alzheimers patients can be violent as well, as can any one of a hundred other degenerative diseases.
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If a patient is deemed to be at risk of harming others or at risk of self harm it can be disclosed without their consent.
If someone donates blood and it turns out to be contaminated the people who received the blood will be informed.
Sperm donation is a similar example.
She is arguing that this kind of severe genetic disease should be added to the list.
BTW I'm not sure how much, if any money she is asking for. In the UK you don't have to want money to sue someone, you can sue just to force them to change thei
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In the case of risk of harm to others or risk of self harm, thats a very specific situation and often requires a court order - it would not apply in this case because the father is already in care and receiving medical attention, and the daughter has not been diagnosed and is not a threat to anyone right now.
Sperm and blood donations are done anonymously (to the recipient) and with disclosure and release forms, so thats a very different scenario.
In this case, she's suing for compensation - the NHS cannot ch
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Yeah, you know I read the summary too. Getting a genetic workup done with you and your spouse before you get pregnant is probably a good idea if you are into that sort of thing. Doctors aren't going to tell you about some other person's medical condition. If you are worried about that sort of thing, take it upon yourself to get yourself tested.
Doctor-Patient Confidentiality (Score:3)
She is claiming they had a duty to warn her, and that she (and her child) were harmed by their failure.
They clearly had a duty to protect the confidentiality of their other patient, her father. He specifically told them that he did not want his daughter to know because he was worried she would have an abortion. Given that the doctors are clearly off-the-hook. They cannot be expected to reveal the medical history of one patient to another against that patient's wishes.
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They cannot be expected to reveal the medical history of one patient to another against that patient's wishes.
Under current laws, that's true. But are those laws just in this case? I don't think that they are. That other patient's medical history is part of her medical present.
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It's a joke that went over your head, it's not HIPPA, it's HIPAA [1]. Lots of legislation in the US in the 2000s was named with an AA at the end.
[1] https://en.wikipedia.org/wiki/... [wikipedia.org]
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If you are that concerned about genetic diseases ...
The issue here is that she didn't know she should be concerned because the doctors, who knew she had an extraordinarily higher than average risk, didn't warn her.
She is claiming they had a duty to warn her, and that she (and her child) were harmed by their failure.
Right - so patient privacy is null and void? Who has the greater right, or are you suggesting that our gene tests need to be taken at birth, and any likely problems, must be given out perhaps not allowing marriage or pregnancy until the woman signs off that she accepts the risk?
I didn't include men because there is case history and settled law that the man does not have rights in reproductive matters. I suspect that since it was a male with Huntingdon's the court will side with her. But what if it was
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People have an inherent right to privacy and that includes medical history. The state must have a compelling interest in order to override that right and when the issue at hand is effectively a dispute that involves two individuals it's very hard to argue that the state has a compelling interest to override the right and force disclosure of medical records. That is why disclosure requirements are limited to communicable diseases that can spread throughout the population.
Your parent's genes influence your ge
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If your parent has something that can be passed on, it's just as much your medical history as it is his own.
A whole shitload of diseases are genetically based. And with different risk likelihood. So your answer is to eliminate doctor patient privilege. You cannot have it both ways.
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If you are that concerned about genetic diseases ...
The issue here is that she didn't know she should be concerned because the doctors, who knew she had an extraordinarily higher than average risk, didn't warn her.
She is claiming they had a duty to warn her, and that she (and her child) were harmed by their failure.
Do OBs not offer genetic testing in the UK like they do here in the US? My wife and I are expecting our first child, and we had the option to do genetic testing at a very early gestational age. Even though neither of us know of any genetic issues or risk factors in our families we decided to do the testing anyway. Of course, we didn't do the whole battery of tests that included things like testing for certain disease prevalent in the Ashkenazi community (which neither of us are) but we did do the primary
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Re:Eh (Score:5, Insightful)
Who has suffered more, the one who has not lived, or the one who has?
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Her child was saved by this failure. She would have aborted the pregnancy.
She might have used birth control and never become pregnant at all, in which case there would be no child, nor any abortion.
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In 2007 her father murdered her mother and was found to have Huntington's, which often results in confusion and violent behavior. She was already pregnant at the time and her father asked that she not be told as he feared she would abort the pregnancy.
Nope, no opportunity for birth control, she was already pregnant when it all started.
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The summary is wrong. From another article [resolution.nhs.uk]
Those concerned with the father’s care considered whether they should override his confidentiality and inform his daughters of the diagnosis. However, the father insisted that his daughters should not be informed. He was asked about this on several occasions but maintained his firm position, especially when ABC became pregnant because he thought she might have an abortion were she to be told.
Re:Eh (Score:4, Informative)
Re: Eh (Score:2)
Or just do not have kids. No need for a test.
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It is already in there. The cops take hair samples from your barbershop.
They also sneak into your room at night to jerk you off and get sperm samples.
Re: Eh (Score:2)
Hey, they do not have to sneak.
They are welcome to come anytime.
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It's more an Alzheimer Robin-Hood thing.
Robbing the rich, but then forgetting about the other bits.