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What if I am denied predictive testing?


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Katrina Hamel: Hi everyone and thank you so much to our panelists. It's so good to see you all. The first question we have is for Vicki. I was denied testing. I went through genetic counseling and was turned away. There was not much explanation, other than they did not think I was ready to test. I was not given any follow-up, nor direction on what to do or how to become prepared to test. What do I do?

Dr. Vicki Wheelock: That is an excellent question, actually, and I think it's an essential one. So, from the very inception, after the gene was found 27 years ago in 1993, there's been this, a framework for doing predictive testing for Huntington's Disease. And I'm going to make this about predictive testing, this question, because if someone were symptomatic, that would be a little bit different, we would handle that a little bit differently. I would say so. I interpret it that way. And from the very first, collaborative statement back in 1994, after the gene was found, it was made very clear, ethically, that the right to test belongs to the person who was at risk. That's their right to have a genetic test. And the framework came along to help to guide people through that process, to have the optimal outcome for that individual.

So, the testing process, as Cat said, varies a bit internationally. In the United States, we have a process that's been codified largely by HDSA, and the centers follow that, but even within our country, there are variations in terms of how that's done.

My answer to this question would be that, when we meet with people who are interested in testing and counsel them about this, we're trying to help them make sure that this is the right time for them to do the test. That they have all the information and all their ducks in a row for being able to do this. And sometimes, there are things going on in someone's life, stress or depression, or being overwhelmed in other places. I might give an example of a world pandemic, for instance, right now, that's affecting people a lot, emotionally. So, the conversation about is this the right time? Are you sure you're ready? How would you, you know, handle this news? What's your support system? Think about if you're sure that this is when you'd want to do it.

So, I think that the best way to handle this would be to reach back to this team to clarify why the message came through that you're quote-unquote "not ready to test." And I do agree with the person asking it, well, if I'm not ready, you know, I'd like to understand why I'm not ready and what I could do to help me be in a better place to do this.

It feels bad to tell someone, "No." It's their right to test. It's our centers, and I think all of us who do testing, it's our obligation to help them through that process. And not to put up barriers but really to try to give them good feedback and good advice about their decision that resides with them.

Katie Jackson: Thank you, Dr. Wheelock. I know Katrina, and I lately have been hearing more about this, where people are denied testing at this time. But, really, it's the support that doesn't follow that. So there was one that a family that is dealing with severe depression and maybe even some suicide ideation, but they felt very abandoned when they were told, "We are not going to test." Because of course, they think a lot of this has to do with HD, the reason why he's feeling this way, and then he was just left. "We don't feel like you're going to. Should test this time, go home." And that, I was just wondering, is there any protocol out there for someone that is denied testing to help support them, not even to test eventually, but through, you know, getting depression medication seeing a psychiatrist. What is in play to help them after they are told, "no"? And if anything.

Dr. Vicki Wheelock: I'll tell you what. So, the answer is, there should be something. The answer is there absolutely should not be a door that shuts, that shouldn't happen. There should be a plan, like a path to go through. So, here's where I think I might want to open this up to Mara and Lisa and Terry to maybe add something to this discussion about your experiences and your thoughts about this.

Terry Tempkin: Thanks, Vicki. I was going to jump in because I, you know, over the years, we've heard people react that they feel like these teams who are doing the testing are being paternalistic. And you know, I have to say, I think the teams work very, very hard not to do that, not to say it's ownership because you know, Vicki, as you point out, it is their right to test.

But one of the confounding things that happen is many times the people coming in for a predictive test aren't patients in that health system. And so when they're not patients in that health system, it's difficult. You can't prescribe for them. You can't see them in visits. You can't treat them. And so if it's one of those situations, you know, the follow-up plan could be to help them get additional resources through their health plan if they have one, or offer them the opportunity to be a patient otherwise unattached to their predictive testing situation.

Katrina Hamel: Good to know.

Mara Sifry-Platt: One thing I was going to add was this; testing is not something that I ever think of as like, "I'm a gatekeeper" or anything like that. I think of it more as somebody's right to their information and that I am a helper, basically, to help guide them through the process, to get that information, and sometimes we do find that it's not a great time. Recently we just had somebody who wanted to get their testing done before they got married. We were, you know, only through the course of a lot of conversations, we're able to help them appreciate that maybe this isn't the right time for me to do this, and perhaps I'll look at this after my honeymoon or whenever I'm ready to do it.

There are very, very few cases where we deny. I mean, I wouldn't even use that word. It's more of a just talking about when is a good time for you to get this information, and when will you be supported, and when will your mental health be in good shape? A lot of times, it's a matter of getting people into counseling.

And I have two roles. So, you know, the role at Kaiser, where people are in my system, it is a lot easier for me to help people maneuver through to get counseling, to get medications, to get what they need than at UC Davis, a lot of the patients that come to us are anonymous and so they're not part of our system. It is like Terry said, really hard for us to help people navigate through that.

Lisa Mooney: What a lot of the teams will do, the genetic testing teams, is encourage people, let them know whether they're testing or whether we recommend that they postpone it or whatever it may be, is to talk to their primary care doctor. If they start having depression symptoms or anxiety, irritability, anger, things like that, that they have extreme difficulty managing or coping with, we also encourage them to reach back out to us. If someone wants to test, I'm happy to call them, but if they decide not to test, I also don't want to harass them and bug them if they've really decided that they just don't want to move forward with that process. So, I want to respect their privacy and confidentiality in that regard.

But they're always welcome to reach back out to the team that they went to for resources because there are lots of resources. There's support groups like Katie was talking about. You can go to your primary care doctor if you need medication assistance. There's individual therapy. There's lots of different things that you can try and because we're in a pandemic, we're getting more and more supportive resources out there.

Most of the time, if we've recommended or suggested that someone maybe consider postponing testing, they're usually pretty mad at that team, understandably so, they're disappointed, so maybe that team is not the person that they should reach out to, but maybe they should reach out to another team or another resource that they have in the HD community, like Katie or Katrina [laughs], who then have resources to get information.

So, anyways. Or me, yeah, definitely. but you know, there is help out there, and it's not "you can never test." It's that maybe this isn't the best time for you, and let's talk through that.

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