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Can I test for Huntington's disease from home?

Katie Jackson: This next question is for Mara. I have been hearing about testing for HD at home.

I am at risk and interested in this option due to COVID. I heard it was a tube that you can spit into and send off in the mail. Is this available?

Mara Sifry-Platt: I love this question. It touches on so many things. Yes, there is a tube you can spit in and, and they can extract DNA from it and do a DNA test on, on this sample.

We do it for other genetic conditions, as well as it can be done for Huntington's disease. I working, you know, in the limited environment that I do at Kaiser in a bubble, where we have our own lab, I had reached out to my colleagues and ask a few more questions and some of the big labs, are offering Huntington's disease testing, through spit. It's something that is certainly an option. I think there's a handful of Huntington's disease Centers of Excellence that are utilizing that through this time of COVID we're all in this unprecedented time where we don't, we're trying to figure out , how to practice our medicine and our testing protocols.

I think we're also bound a little bit, you know, by the restrictions of our various centers. We're all trying to follow guidelines that are being put out, for our, all of our wellbeing, as well as our particular, organizations that we work for. And so, yes, testing through home is possible. Some places are still preferring that folks come in person for their predictive testing, of course, with the appropriate masks and care being given. But I know that like we're handling those case by case as people have questions about predictive testing through video. It's really hard to give a lot of examples about what makes it feel okay and what makes it not feel okay to, to test somebody through video. it's kind of a feeling that we get and , we have to talk through, I mean, some, their science for me would be really hard for me to test somebody that was actively suicidal through a video that would not be something that I would feel comfortable doing.

And in, I wouldn't do it in person either. You know, that person would need to kind of sort through that part of their life. Someone with really severe depression, it would be really hard to do this, you know, online.

Dr. Vicki Wheelock: I wanted to add something to that. Thanks Mara. It's a really good question because I think the access to getting one's genetic results is it's a very important thing. It's, you know, it's, people's right to find out and, and clearly more and more people want to know this. We're seeing a real uptick in people undergoing testing. To me, there's one absolute that's so necessary. And that is you should have genetic counseling around doing a test. So if you have the idea that you can find a lab and you can do the test, but you don't have a genetic counselor that meets with you before you do that and after you do that, I would really worry about that.

,I don't think it's very safe and that doesn't mean for every person, every situation, but since you don't know how someone's going to handle this news, how they're going to react. A lot of the process we follow is, because the day that people find out their genetic test results is super, super emotional and the afterwards that's what Cat talked about.

How do people feel, you know, a month later, six months later, a year later? It's very complicated. There's a lot of grief involved, different types of grief, complicated grief in simple grief. But I think the key with any type of testing paradigm is you must, must have access to genetic counselor.

That's the bare bones of this. And if you have a team that's better, if you have the team that might be offering care to you, when you need that, that that's a good thing The most important is the genetic counseling.

Mara Sifry-Platt: And these predictive testing labs that, I mean, the labs they're doing Huntington's disease testing with, spit.

They do require a genetic counseling and an MD to sign the order. It's not like a direct to consumer test, like 23 and me or something like that. It's still a medical test that requires a doctor's order.

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