Old 12-29-2016, 04:37 AM #1
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Default Acquiring genetic testing results from a deceased family member

Let's say you had a first cousin who passed away from ALS in 2011. Now you have ALS and you don't know if your cousin had genetic testing done. None of your family members know if your first cousin had genetic testing done.

Here's my questions:

Could you find out if she had genetic testing done? If you called all the labs that do testing in the United States, would they tell you? Would they tell you the results?

Rob
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Old 12-29-2016, 08:38 AM #2
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Default Re: Acquiring genetic testing results from a deceased family member

I think they would refuse to release the results unless you had a signed and notarized Power of Attorney.
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Old 12-29-2016, 12:08 PM #3
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Default Re: Acquiring genetic testing results from a deceased family member

No, not without a HIPAA release. However, anyone who had access to her records in life, e.g. spouse/partner, can request them after death.

If she passed away from ALS, and went to an ALS clinic at some point, they might confirm, with an understanding of the present situation, whether she was in any study/database relative to a hereditary variant.
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Old 12-29-2016, 03:17 PM #4
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Default Re: Acquiring genetic testing results from a deceased family member

The doctor that performed the EMG on the first cousin is Jeff Tam Sing M.D. of Neurology of the Rockies. I just called his office and spoke with the receptionist. I explained the enormous ramifications of fALS on our very large family. I got a big "NO" on everything I asked:

Q. Could you tell me if she had genetic testing done.
A. No, not without a HIPPA.

Q. Could you tell me if the doctor referred her to an ALS clinic.
A. No.

Q. Could you tell me what clinic the doctor typically refers patients to that he diagnoses with ALS.
A. Blah, blah, blah. (I think the answer was "No".)

Q. Can I speak with the doctor?
A. You just missed him by two minutes. He won't be back until after the new year. (translation = No)

Sigh... Well, I'll call some of my wife's relatives and see what I can find out.
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Old 12-29-2016, 04:36 PM #5
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Default Re: Acquiring genetic testing results from a deceased family member

Who was the cousins CALS? That's where you should start.

I can't imagine a receptionist in any medical centre giving a single piece of information out - no matter what reason you gave it's highly illegal and rightly so. How would the receptionist know you were telling the truth after all?
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Old 12-29-2016, 05:07 PM #6
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Default Re: Acquiring genetic testing results from a deceased family member

Over the phone or in front of other coworkers, nobody will tell you anything. Face to face, however...
My very charming and pretty redheaded ex-wife could get anybody to give her anything. She once went to my bank--after I gave the bank our divorce papers and took her off the account. She persuaded the banker to give her the money in my account!
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Old 12-29-2016, 05:19 PM #7
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Default Re: Acquiring genetic testing results from a deceased family member

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Who was the cousins CALS? That's where you should start.

I can't imagine a receptionist in any medical centre giving a single piece of information out - no matter what reason you gave it's highly illegal and rightly so. How would the receptionist know you were telling the truth after all?
I expected the responses I got from the receptionist. I did ask the receptionist if she could call the cousins spouse who I assume was the CALS and give him my phone number so he could call me. Again, the answer was "no".

I just need to make some more calls to family members and see if anyone is still in touch with the cousin's spouse.
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Old 12-29-2016, 05:46 PM #8
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Default Re: Acquiring genetic testing results from a deceased family member

I know this is a really hard time - the first couple of months after diagnosis are so awful. So much shock, so hard to accept the reality of what has been pronounced.

It's a hard time of year for everyone as well being such a 'festive' season. Many people are on holidays or at least things are not running as usual.

It won't change anything if you just slow down a little and see if you can contact the cousin's spouse personally. Is this a first cousin, or a more distant relative? I only ask because you said
Quote:
I just need to make some more calls to family members and see if anyone is still in touch with the cousin's spouse.
I say it won't change anything because it's not like this would open a treatment option. It could make a difference if you are interested in trials for particular genes, but again if it takes a couple of weeks that is not going to make a big difference.

If this is a large family, it would normally be known that it is FALS because there would be more than one person that has been affected. Our Nikki for example (who is away at present) is the 6th person in her family in her own life time. That is normally how FALS goes.

It is worth pursuing, but if this is not a first cousin, and there are no other family members affected, it is unlikely to be FALS. If you can't find the cousins CALS, and again, if this is not a first cousin, you are unlikely to access records, and they may not be a big deal. If this family member was the first in the family to be diagnosed, then it is unlikely that any genetic testing was done as they would not have been looking for FALS.

I can't imagine how distressing it could be to feel that on top of this diagnosis you are dealing with FALS, but I hope you can just let yourself breathe a little, and see what the family can turn up.
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Old 12-29-2016, 07:18 PM #9
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Default Re: Acquiring genetic testing results from a deceased family member

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Is this a first cousin, or a more distant relative?
It's a first cousin. My situation is somewhat complicated and there's more to the story. While the results of genetic testing may not affect my wife's treatment options, the ramifications for me can be life changing. I mean, when my wife was diagnosed on Nov 21, 2016, my life changed. If a certain other family member tested positive, I just don't even want to think about it...

Finding out genetic information about the first cousin isn't critical. It would be nice to know if she was tested, what she was tested for and the results. That could save me some time and money. But if I find out nothing, I can just have my wife tested. If my wife test negative, I think I'll go insane.

But you're right... It's the holidays and many people are out of the office so I should just tackle this after the new year.
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Old 12-29-2016, 09:59 PM #10
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Default Re: Acquiring genetic testing results from a deceased family member

Before shelling out money for testing, and when the festive season settles it may be more worthwhile digging into family medical history. A large family will have lots of evidence.

I know that thinking of the next generation down would be too excruciating to imagine.

Of course knowing if this is FALS or not is important, it just doesn't have to be done right now today, this week, or by the wrong avenues.

I truly hope this is SALS like at least 90% ALS cases are. Goodness knows that's bad enough.

I hope you are being supported by family and friends?
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