Genetic Testing Should Come With Counseling: American Cancer Society CMO, Supreme Court Plaintiff Among Experts Who Warn of Consumer Risks | Page 6
Published Online: December 13, 2013
Produced by Nicole Beagin
when we apply those criteria, there aren’t that many that have shown to be associated with beneficial health outcomes. They may be reproducible and have other attributes that the manufacturer tout, but at the end of the day can you show that people live longer or shed some of the burden of disease? And the answer is usually no. And if it’s no, then we would decline to cover it.
Nagy: Like Dr Finley said, there are some like KRAS … that we all know and have been well studied and well validated; those are already in the clinical setting. The research that I was talking about is more where they do kind of a whole exon or whole genome on a tissue and it’s sort of a fishing expedition. They don’t really have a targeted test that they have in mind; it’s more, “Let’s see what the tumor looks like and see if we can tailor treatment to that patient.” And I think that is different. It’s going to take a little more time for us to work through that.
Berger: I appreciate you sharing the differentiated area there because it is very different. Before I close us out, I want to give everybody 30 seconds to give their final thoughts. Why don’t we start
with Ellen Matloff and then we’ll work our around the panel. Any final thoughts to share?
Matloff: Yes, I think that over the last few months I’ve done a lot of research myself looking at genetic counselors who either work at insurance companies or work at laboratories who are helping to review claims coming in for genetic testing to see if, first of all, the right test is being ordered. I’ve been surprised and, quite frankly, horrified. I’ll give you an example. One genetic counselor told me that they frequently get a sample that will come in for a kerotype, a chromosome study, but the indication for testing is whether or not the patient has cystic fibrosis, and that’s not a chromosome disorder. So people are not only ordering the wrong test, but they’re not going to get an answer to the question that they’re asking. So I think that we will probably use genetic counselors in that realm to make sure the right test is being ordered, not only to save healthcare dollars, but to ensure that the patient is getting the test that he or she and the entire family needs.
Berger: That’s interesting. It’s almost like the older days that I remember when I was unsure which radiologic test to get and so I regularly would call the radiologist and say, “This is the problem, this is what I’m looking for, what should I do?” It sounds like this is another area where that kind of advice and support is very important. Joy Larsen-Haidle, do you have any final words?
Larsen-Haidle: I do. I appreciate the opportunity to have this discussion, because it’s so important, considering what we are spending. Each of these DNA tests is often a couple of thousand dollars apiece, so for the healthcare resources that we have, it’s important for us to start targeting those healthcare dollars toward care that actually makes a difference and improves the health of our patients and the family members. … There is talk about how having the opportunity for the patients to be working with a genetic counselor on these genetics test, that it improves their understanding of what that result means. It ensures the patient is getting the appropriate testing ordered, and it also improves their compliance with the appropriate surveillance, or it improves their understanding, so they can have a good conversation with their physician about risk reduction. It also helps for patients to take that same test and share that information with their family members so that same healthcare dollar is expanded further to benefit more people.
Berger: That’s wonderful. Thank you. Dr Brawley?
Brawley: I just love the last comment. I think the most important thing you can get from this discussion is that we all need to appreciate that genetic testing is a very complicated thing, and it really needs to stay within the realm of the expert. In my mind genetic counselors are the first experts that really need to be consulted and really ought to be very heavily involved as gatekeepers in all of these tests, that is for risk assessment. I’ll just add that right now, we should have very limited genetic or genomic testing for prognosis as well for…which chemotherapy should be used. There should be some, but it should be very limited.
Berger: I think you bring up a good point; at a time when we’re looking at ACOs and we’re looking at patient-centered medical homes, it really does take a village, and the genetic counselors are a very important part of that village. With that, Rebecca Nagy, what other final comments would you like to give?
Nagy: All of us in this discussion have experienced quite a bit of change over the last several months, and I think sometimes change makes people uncomfortable. As we go forward with our physician partners we want to make sure they know that genetic counselors, and NSGC as an organization, want to do everything we can to partner with providers to make sure that patients receive the best care. That’s what we’re all here for. And I think within the framework of the Cigna program, for example, we see this as a partnership where we can provide our expertise, give those providers the genetic information that they need to manage these patients, and then turn that patient over to them for their expertise in managing and following the patient and preventing genetic disease as much as we can.
Berger: Wonderful. Dr Finley, you are last but definitely not least here. What comments can you share with us all?
Finley: Genetic testing and genetic counseling are both areas that are changing very rapidly. It’s a complex world, and there are competing interests within that world; there are feelings about how genetic counseling ought to be done, how genetic testing ought to be done. The important point to take away, which was mentioned earlier, there have been a lot of studies on the appropriateness and efficacy of genetic counseling as well as the appropriateness and efficacy of certain genetic tests, and at the end of the day we need to rely on studies that have been published and have gone through peer review. Medical literature should guide us in establishing the direction that we need to go.