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Old 12-02-18, 06:11 PM   #3
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,152
Default Re: Predictive testing centers - questions

Hi there

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

USA conditions for Genetic Testing for HD

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 Huntington’s Disease Society of America (HDSA), 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:

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.


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:

Anonymous testing for HD: 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.

Confidentiality 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).

Genetic Testing Program for Huntington’s Disease

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

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


Anonymous predictive testing for Huntington's disease in the United States [abstract]

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

Best wishes

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