It’s a new year. (Rosh Hashana was Monday and Tuesday.) Let’s start the controversies flowing quickly.
I know that some of you thought it was acceptable for the cops to comb DNA databases- since they were looking for bad guys. (You made those comments on my blog right here.) (Of course, it’s not clear how many of you would think it acceptable for the cops to comb every house in the neighborhood without a warrant- even if they were looking for bad guys. You see, it’s the same damned thing.)
And, then I told you that hospitals and clinics were sharing your data with for-profit firms so they could build databases with which they can market things to us.
But, this violation of our privacy rights is going to get worse.
A woman is suing a hospital. ( Patient ABC versus St George’s Healthcare Trust) Why? Because the hospital diagnosed her father with Huntingdon’s disease. WTF? You see, she’s ticked off that they didn’t tell her that her father had the disease. And, as far as she is concerned, she’s entitled to break the confidentiality of her father’s doctor-patient confidentiality because she may be affected. Actually, she’s ticked off because her kid is likely to develop the disease. (Every child of someone with Huntingdon’s disease has a 50% chance of inheriting the disease.)
The case is to be decided by the High Court in London in two months. Just so you know, the rules in England are the same as those that obtain in The States when it comes to confidentiality of patients, unless the patient consents to it being shared with others.
Depending on the decision, the issue may become even more sticky. What if the person is like me- who has no desire to know if there is a disease-causing gene variant in my genetic pool? Are they going to tell me anyway, if that’s the decision the court derives?
This is not just isolated to Britain. Germany had a similar case. OK, the opposite case.
Here, a woman was informed that her ex-husband succumbed to Huntingdon’s. And, therefore, her two children were at risk for the disease. In this case the physician had the consent of the ex-husband to inform his ex.
Why did she initiate a lawsuit? Because the data is useless. After all, there is no cure for Huntingdon’s and her kids are way too young to be tested. All it did was leave her depressed and unable to work.
The case got appealed and sent around, but some 5 years ago, the decision was in favor of the doctor. But, it’s more curious. Because Germany has a different view than the UK- the right NOT to know is legally protected in Germany, when it comes to genetic data.
Anyone willing to bet how the US Courts will decide? (Especially since the Courts have been stuffed with many less than competent jurists since TheDonald became President. So far he has added 152 judges.)
Wow, controversial yes! While yeah the hospital could have told the daughter of her father, there is the privacy of the patient and unless the person is on “the list” they have no right to the information. One reason why (although not a fan of doctors myself) one needs to have those regular checkups!) I get her need to know for her family and genetics BUT at the same time, we also need to stay close and in touch with our families and OPEN the lines of communication. Having a father who had diabetes, heart disease, etc. I knew of these things and was there for him, and followed my families health history. You need to rely on your own research and communication with family rather than hospitals/ doctors/ etc because the law prohibits them from divulging information due to PRIVACY! SO I do get both sides of the issue… I stand by the answer being COMMUNICATE (you know that lost art the world knows little of as the days go by- sadly so) WITH FAMILY and all! KEEP THOSE LINES OPEN! Technology makes it easier to do so, use it and talk in one way or another with each other! It could be as simple as a text, email, phone call, or better yet in person- maybe even a video chat!
So, we have treatment options for diabetes and heart disease. One of the best is lifestyle and diet changes. That we seem to NOT take. But, if the disease has no cure, then I don’t see communication providing any benefit.
you have provoked this very necessary thought in my mind! To learnabout the genetic problems or not to! I am unawre of the laws and rules in India. thanks for steering my mind in this direction.
The laws in India on this matter are – for now- similar to what they are in the States.
Everybody is suing everybody nowadays. In the meantime, we watch our heath insurance rates rise and rise…..
I am not sure these lawsuits contribute to higher health insurance rates. Those are more related to the rapid (unjustified) rise in insulin costs, the treatment costs for Hepatitis C, etc. Not to mention folks wanting higher wages- and the physicians wanting more for themselves, too.
Very interesting perspective. I struggle with wanting or not wanting to know about a particular disease that runs on both sides of my family. I’m still on the fence and articles like this help clarify a side of the argument.
I know that autoimmune diseases got both my parents. So, there’s a good chance that is how I will go, too. But, given that there’s no cure for those diseases yet, I will simply stay busy and enjoy my life as long as I am able.
We are so far into uncharted territory right now that couldn’t even have been imagined when I was born, nearly 67 years ago. I lost a first cousin to Parkinson’s two years ago this month. I’m told a genetic link is rare. But what if there was a test AND I could receive monitoring and get the chance for a good life at least for a time if caught before symptoms appeared? I can agree, there should be a right not to know, especially when nothing can be done anyway. Why have a sword dangle over your head for years to come. On the other hand, what if medicine could do something for the family member(s)? Wouldn’t family members want to know even if the tested person didn’t want the family to know? When is the right to privacy trumped (sorry)? For me, Roy, this isn’t clearcut.
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It isn’t clear-cut. But, I do stand by my feeling (see, NOT a fact) that if there is no know cure, then providing me my genetic prognosis is not the right solution.
What challenging decisions! This makes me so happy that I never had any aspirations of becoming a judge.
Touche, Alice! It’s hard enough just being us!
Wow! I’m not a fan of my info being shared within the medical community. That’s just wrong! I would want to know if there is a family medical history that could affect me or my children. Not sure I would sue the hospital or doctor if I knew the disease was debilitating.
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It is a brave new world we are inhabiting nowadays, Aletha. It’s going to take some mighty large adjusting.
I think I’m like you, if I was told I might have a disease causing gene, I’d worry my life away. What if i had it but it didn’t have any affect me or my children? I could see where this could cause a lifetime of worry. I’ll take my chances on what God has in store for me.
Thanks for that honest share, Martha!