Elizabeth Swisher, MD, professor at the University of Washington School of Medicine talks about a new trial that can get more women screened for cancerous genes.
So, talk to me a little bit about the MAGENTA study. What are you and your colleagues looking at?
SWISHER: So, the MAGENTA trial was designed to try to make genetic testing more accessible. And we were interested in genetic testing for cancer risk, which can identify individuals who have an inherited risk of cancer. And identifying these people is really important because that gives us the opportunity to prevent cancer. And most of the genetic testing in this country is done after people get cancer to find out why they got cancer. But genetic testing itself is a really powerful tool to inform people about cancer risk. And so, we want to make it more accessible to people. So MAGENTA was using newer sequencing methods and new technologies to offer testing to people directly in their home. But if we’re going to do that, we want to know, like, what’s the best way to deliver that test to people? If we’re going to deliver the test to people at home, how much education do they need? So, we set up the MAGENTA trial to test, can we deliver genetic testing to women at their home to identify an increased risk of ovarian cancer? And what’s the amount of counseling or education that those individuals need for optimal outcomes from that testing? And so it’s a four-armed trial, which means people were randomized. They entered the trial, and then they got into one of four categories and they either had to do mandatory telephone counseling, individualized, before they got their test or they had to do counseling after they got their test or they had to do both, which was kind of the current standard that’s being done, though not necessarily at home. And so, it was set up that way. And our goal was to see if people had more distress when we gave them less counseling or could we offer less counseling and increase uptake of the testing and still have the same outcome?
And what were your findings?
SWISHER: So interestingly, we found out that women who had less testing, particularly the pre-test counseling, less counseling before the tests that they had, had less distress and a higher rate of completion of the testing than people who had the mandatory testing before and after. I do want to point out that if people had a positive test, meaning they had a high genetic risk of cancer, they got counseling after that test, regardless of which arm they had originally been assigned to. So, we think that for individuals who have a negative genetic test, they can get enough education just online with video information and post-test information delivered directly to them, that they don’t necessarily need individualized counseling if they have a negative test.
And so, was it just ovarian cancer or was there also breast cancer as well?
SWISHER: So, the testing included genes for both breast and ovarian cancer risk. This trial was funded by our Stand Up to Cancer, Ovarian Cancer Dream Team. And so, we were specifically looking at ovarian cancer risk. But the panel that we used included genes for breast cancer risk as well. So, one of our outcomes we wanted to see was, how did women use that information? Were they able to use that information to decrease their ovarian cancer risk as a way to improve the mortality from ovarian cancer?
How many people did you have in the study?
SWISHER: We enrolled over 4,000 women from all 50 states. And what was a bit unique about this study was that it was a purely online engagement with patients. And we recruited through either traditional media or through social media. Then women would go to a website, get information about the study. And if they wanted to proceed, they could fill out a questionnaire online that told them whether they were eligible or not eligible. And if they were eligible for the study, they did that consent purely online. And then after they had their mandatory or not counseling, they all did watch a video that gave education about what genetic testing meant. And then the test was delivered to their home and it was a spit kit. Then they shipped the two back with labels and everything to just put it back in the box. They ship the kit back, it went to a company called Color Genomics. They did the testing and then we provided the results either with or without counseling, depending on which arm they were in.
So, you guys could determine their risk for ovarian and breast cancer all through – just from their spit?
SWISHER: Yeah, exactly. So, it’s a really a noninvasive test. And you know, we started this trial about four years ago, and at that time, of course, there was no pandemic. But I think it’s particularly apt now as we’re thinking about ways to deliver health care to people in their homes and remote medicine, essentially, that this, you know, gives us assurance that this is a safe way to deliver genetic testing, which is a very, you know, it’s a complicated test but it’s not – it doesn’t – we don’t have to make it more complicated than it is.
And are there any disadvantages to taking it at home versus getting a test done at the doctor where you get the blood drawn? Are the tests more – is the test more accurate at the doctor’s office versus the spit test or is the accuracy the same?
SWISHER: No, the accuracy is the same. We use the same kit even for patients that come in. We often have them – we use the same kit and send it to the company. It’s just that the current mode of genetic testing is usually we make the patient come in, they have to see a counselor. They then get, you know, insurance pre-authorization for the test and then they get the test done. Then a few weeks later, they have to come back and get the results in person. So, it requires several visits. And so, this bypasses that and hopefully, makes it more accessible to people. You know, we’re looking at all kinds of cancer screening and prevention to allow people to do that at home. And so, I think it fits in that mode. The more that you make a test accessible, the more likely people are to take it up. So, the test is just as accurate that we offered. And I think you could sort of look at the parallel with HIV testing. In the days when HIV testing first became available, we made people come in, they had to get counseling, they had to sign a consent, then they got their blood drawn. They had to come back and get the testing done, get the results in person, get counseling. And you know, now you can go to a Rite Aid or a CVS and just get an HIV test. So, the more you make it available to people, then the more the uptake and the potential benefits from the test results can then be more widespread.
And how long do the results take?
SWISHER: And so part of how long it took in this particular study had to do with whether or not they were assigned to counseling. Because if they were assigned to counseling after they got it, then they had to make that appointment, do the counseling before the results would be released. But if you were just doing it without that, without any required counseling, it takes about two to four weeks to get the results back.
And would you imagine that the cost difference would be? Would the cost be any different from doing at home versus going to the doctor?
SWISHER: Yes, so I think the cost is less. And that’s another thing we ultimately wanted, for genetic testing, was to really prevent as many cancers as possible, we want to make population testing available, which means test everybody. Test all women at the age of 30 for genetic risk for breast and ovarian cancer, regardless of their family history. So, in order to do that, we have to make the test easy and cheap and more efficient, kind of like, you know, you get your cholesterol screened, right? Everybody gets their cholesterol screened at some point in their life. It’s just, you know, you go in and you do that. If we want to make the test that widespread, then we need to make it cheap and efficient. And so that really was a major motivation of MAGENTA was, how can we make this more accessible to patients and how can we make the whole system more efficient and potentially cheaper so that we could offer testing to a wider number of patients?
Would this at-home testing, would that be good for everybody? Or are there some people that this genetic testing would not particularly be the best option for?
SWISHER: Yeah, so that’s a good question. So, there is about 1% of patients where we didn’t get enough DNA from their spit. And so, they really needed to come in and give a blood sample. The algorithm was to give them another spit kit and have them try again. And then there’s a small fraction of people, less than 1%, who just don’t seem to generate enough DNA in their spit for whatever reason. And then they need a blood test. But for almost everybody, it’s a really effective way of doing the testing. In terms of is their people that you shouldn’t do genetic testing in or it’ll give you the wrong information? Not really. This genetic risk affects all populations. So right now, we test mostly rich, white women for genetic risk. Like much of our health care, there’s great disparities in genetic testing. And we really hoped with MAGENTA to be able to access a wider group of patients. And since we were recruiting on social media, we actually did targeted, like, Facebook advertising to more rural populations, to more diverse racial populations, and we had limited success. We still mostly tested a educated, well-off, mostly white population. So, if we want to use genetic technologies to decrease health disparity and not increase it, we have to find ways to make this more broadly accessible to other populations. And that’s some of the work that we want to do going forward, is increase awareness about ovarian cancer risk and genetic risk in general amongst a broader population.
Digging into my next question, so with the information that you found from this study in this trial, what next steps are you taking?
SWISHER: So, one of the things that we’ve done is we’ve created a group called And Mountain to raise awareness about ovarian cancer risk and genetic risk. And anymountainson.com is a website that we just launched a week ago. It’s a nonprofit and it’s around using creativity to raise awareness about ovarian cancer risk and particularly, genetic risk and ways to decrease that. And we have a quiz that you can take. There’s also an app that you can download if you want, where you can take a quiz about your family history and see if you really should consider genetic testing for your cancer risk. So, we’re really pushing to kind of raise awareness. And Joanie Hope is a gynecologic oncologist from Anchorage, Alaska, and she’s also a musician. And she created an original hip-hop song called “Any Mountain” which is why we named it that. And that song is on Spotify and iTunes and everywhere now, that’s just been released, to raise awareness. And using hip-hop, we hope that we can kind of access a younger generation, you know, a more diverse group of patients that might not be aware about this important issue.
And a lot of times, I feel like going to a doctor’s office, people get so nervous. And thinking that you’re going to have to get a test at the doctor’s office and have to wait for results. What impact do you think that will have for someone, you know, just taking this test in the comfort of their homes, not worrying about, you know, sitting in the doctor’s office and them waiting for them to draw blood, just that nervous period in between?
SWISHER: Yeah, I think the more that we deliver health care to people at their home, if it can be done efficiently and safely, the better in terms of overcoming just those barriers that you noted. And this is one way to do that. And I think there’s many other cancer prevention tools. There’s, you know, for cervical cancer, for instance, HPV testing. Now there’s going to be home testing that people can do. So, if you don’t have to go to your gynecologist to get your pap smear and your HPV test, you know, we may capture the people that aren’t currently getting cervical cancer screening.
Anything that I didn’t ask you that you feel that people should know?
SWISHER: I think it’s really important to know your own family history if you’re thinking about genetic risk. And sometimes we don’t think about asking. And one thing that women and sometimes physicians even think that only your mother’s family history matters when we’re talking about women’s cancers. But you can inherit this genetic risk from either your mother’s side or your father’s side. Sometimes the fathers have prostate cancer, but sometimes they have no cancers at all. So, you want to ask about sisters and mothers, and did anybody have cancer on either side of the family? Where did that cancer start? Not where did it end, but where did that cancer start? You know, and then at what age did that person get cancer? And take that information, take the quiz or talk to your physician about your family history because that information can be really important, and it could be lifesaving.
Interview conducted by Ivanhoe Broadcast News.
END OF INTERVIEW
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