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-   -   Predictive testing centers - questions (http://hdmessageboard.com/showthread.php?t=5675)

eastern1234 11-02-18 08:57 PM

Predictive testing centers - questions
 
Hello all,

I understand this forum is based in the UK, but does anyone here have information on centers in the U.S. that allow an individual to undergo predictive testing without having family members and/or close friends present? I have contacted several centers nationwide and none of them will allow me to conduct testing without some type of “support.”

A few years ago my mother passed with HD. Nearly all her siblings had the same, as did their mother. My only surviving family member is my uncle who is also at risk. He is very emotional about HD and has said if I decide to go forward with testing, he will do the same. I don’t want my desire to know to be a catalyst for him feeling obligated to do the same. To be blunt, he is just not ready and I would rather keep this quiet.

None of my friends truly understand HD and I am not comfortable sharing something so deeply personal as genetic testing with them.

Please don’t try to dissuade me from undergoing this alone. I have a successful career, my financials and insurance are in order, and I am not mentally unstable. Having attended the pre-testing protocols (genetic counseling, evaluations, etc.) with people in my family, I am well aware of the implications of testing. Having lived with this threat and watching the people I love go through it, I do not need a counselor to explain to me what I already know. A positive or negative test will not rock my world - I am prepared and have reached a mature point in my life where I simply want to know.

Thank you.

Trish 12-02-18 03:03 PM

Re: Predictive testing centers - questions
 
[QUOTE=eastern1234;65903]Hello all,

I understand this forum is based in the UK, but does anyone here have information on centers in the U.S. that allow an individual to undergo predictive testing without having family members and/or close friends present? I have contacted several centers nationwide and none of them will allow me to conduct testing without some type of “support.”

A few years ago my mother passed with HD. Nearly all her siblings had the same, as did their mother. My only surviving family member is my uncle who is also at risk. He is very emotional about HD and has said if I decide to go forward with testing, he will do the same. I don’t want my desire to know to be a catalyst for him feeling obligated to do the same. To be blunt, he is just not ready and I would rather keep this quiet.

None of my friends truly understand HD and I am not comfortable sharing something so deeply personal as genetic testing with them.

Please don’t try to dissuade me from undergoing this alone. I have a successful career, my financials and insurance are in order, and I am not mentally unstable. Having attended the pre-testing protocols (genetic counseling, evaluations, etc.) with people in my family, I am well aware of the implications of testing. Having lived with this threat and watching the people I love go through it, I do not need a counselor to explain to me what I already know. A positive or negative test will not rock my world - I am prepared and have reached a mature point in my life where I simply want to know.

Thank you.[/QUOTE]

Hi Eastern

Welcome to Messy Board

YEP, it is advisable that you have 'support' going through the process but NOPE I'm not gonna question whether you are strong enough to go it alone. The explanation for your motives, and the fact you recognise even a negative test will rock your world suggests you are under no illusions about how tough the journey is likely to be.

I can't give you any names of Centres but I do know someone on Messy Board who tested in the USA (a British National working there) and his posts suggest he may have been in a similar position.

Take a look on the Members list for Patrick (Sample post [url=http://hdmessageboard.com/showpost.php?p=9199&postcount=12]HERE[/url] and see what you think.

Patrick doesn't come in much these days but I may be able to contact him on other social media if you like. That said, I can't promise Patrick will respond to me or have any addresses. Does look though that in the USA they have more relaxed guidance about testing for HD than we do. No idea where Patrick tested or how much it set him back and it was quite afew years back.

Allan 12-02-18 06:11 PM

Re: Predictive testing centers - questions
 
[COLOR="white"].[/COLOR]
Hi there

Here’s what I’ve come across. It seems like [B]Anonymous Testing[/B] might be your best bet.

[B]USA conditions for Genetic Testing for HD[/B]

Although complex ethical and practical concerns surround the practice of genetic testing, there are no national laws regarding predictive testing for HD. In the absence of any official or enforceable regulations, guidelines for genetic testing have been developed by the [B]Huntington’s Disease Society of America (HDSA)[/B], the Huntington’s Disease Society of Canada, and the International Huntington Association, in conjunction with the World Federation of Neurology Research Group on Huntington’s Chorea.

I started by reading this:

[B]ANONYMOUS TESTING[/B]
The advent of direct gene testing makes it possible for a person to be tested without the involvement or knowledge of other family members. All testing centers adhere to basic standards of medical confidentiality. However, some individuals have exceptional concerns about confidentiality and desire “anonymous” testing. Although anonymous kits or procedures are available for HIV testing and pregnancy testing, this approach has not yet been applied to genetic tests. Because there is no standardized definition of anonymity nor an accepted means to remove some or all identifiers from an Individual’s medical file or test requisition form, the center and the Individual must discuss and agree on how best to meet the Individual’s needs or desires. An Individual’s desire for anonymity may create a barrier to the supportive relationship that the counselor seeks to establish and can make subsequent care for psychological or neurological symptoms more difficult to provide. Some centers may decline to or may be unable to perform predictive testing anonymously, but depending on the situation or Individual seeking anonymous testing, other centers may be willing to work with the Individual to provide the desired service. Whether a person tests negative or positive for HD through an anonymous test, he or she may need to be retested at a later date for their medical file.

[URL="http://hdsa.org/wp-content/uploads/2015/02/HDSA-Gen-Testing-Protocol-for-HD.pdf"][COLOR="Blue"][B]GENETIC TESTING PROTOCOL FOR HUNTINGTON’S DISEASE[/B][/COLOR][/URL]

Then I read this:

“Many people feel very anxious about starting this process and want to proceed immediately to the blood draw, bypassing the counseling and the evaluations. There are several reasons why we cannot accommodate this. The recommended guidelines for genetic testing require the components of evaluation and counseling and cannot be by-passed – no matter how certain the person is that he/she wants to test. Most people find the process helpful and learn things they hadn’t considered prior to beginning the testing process.”

But Shift does happen:

[B]Anonymous testing for HD[/B]: using a pseudonym: Some people seeking HD testing prefer to do so anonymously. We offer anonymous testing at UC Davis, but it can only be used when people agree to pay privately for testing. The anonymous testing process cannot be used for people who choose to use their health insurance. The total costs for anonymous testing vary, but are generally about $1000 for the counseling visits and the blood test.

[B]Confidentiality [/B]is of utmost concern to the testing team and the individuals undergoing predictive testing. Our testing center will work with you to assure your privacy to the best of our ability, but of course, we cannot absolutely guarantee electronic security. We also create an additional file outside the electronic medical record on a password protected 5 secure server that can only be accessed by the testing team members. This outside list connects the testing number with the name of the individual in case anyone on the team or someone who has tested would need to obtain the test result and may have forgotten their pseudonym identity.

Our team takes your privacy very seriously. This is how our process works:

Anonymous testing: We create the electronic medical record under a pseudonym (for example AA0999) instead of your name. We also keep a paper “shadow file” locked in our office that DOES have your name and contact information.

We have to be able to match who the pseudonym is with the real person for several reasons:

• We must be able to contact you to schedule your visit(s)
• You (and not anyone else) may at some future date request an additional copy of your test result (you receive one at your disclosure visit)
• If you test positive, you may ultimately need care. Your Pseudonym chart could be converted to your real name at that point (with your permission, of course).

[URL="https://www.ucdmc.ucdavis.edu/huntingtons/files/Genetic%20Testing%20letter%20COE%202016.pdf"][COLOR="blue"][B]Genetic Testing Program for Huntington’s Disease[/B][/COLOR][/URL]

So, for $1000, or thereabouts, it can be a very straightforward process

There’s even a recent thesis surrounding the current view:

[URL="https://scholarworks.csustan.edu/bitstream/handle/011235813/992/FarrarC%20Sp2016.pdf?sequence=1"][COLOR="Blue"][B]AN UPDATED VIEW OF INDIVIDUALS’ ATTITUDES, BELIEFS, AND CONCERNS REGARDING PREDICTIVE TESTING FOR HUNTINGTON’S DISEASE[/B][/COLOR][/URL]

[URL="https://www.ncbi.nlm.nih.gov/pubmed/11788086"][COLOR="blue"][B]Anonymous predictive testing for Huntington's disease in the United States[/B][/COLOR][/URL] [abstract]

Hope you can find a Genetic Centre close to home who'll do that for you ...

Best wishes


[COLOR="White"].[/COLOR]

eastern1234 13-02-18 06:53 PM

Re: Predictive testing centers - questions
 
Dear Trish and Allan,

Thank you for your informative replies! I had heard of anonymous testing but the information I'd found was obscure at best - this has pointed me in the right direction and I very much appreciate it.


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