Genetic Testing Should Come With Counseling: American Cancer Society CMO, Supreme Court Plaintiff Among Experts Who Warn of Consumer Risks | Page 3
Published Online: December 13, 2013
Produced by Nicole Beagin
Nagy: With the Angelina Jolie news, we did see a brief but limited increase in the number of requests for utilization management. From the Supreme Court what we have gotten is about 4 or 5 inquiries from the labs that are offering the BRCA tests about contracting with us.
Berger: And some of the others? Are you busy? What are you finding?
Brawley: The Supreme Court had little effect on us. Long-term, with more companies in the market and more companies advertising, this could change. Keep in mind, prior to the Supreme Court decision, Myriad had significant advertising campaigns encouraging women to talk to the doctors about BRCA testing. I think you have more companies that are doing that now than you had prior to the Supreme Court decision. After Ms Jolie’s announcement—and I should point out that I thought her letter in The New York Times was very well written and very responsibly written—we had a large number of calls. We heard from people who suddenly were very interested in BRCA testing, and, unfortunately, not interested in anything but BRCA testing. We’ve also seen an increase in the number of women getting bilateral mastectomies, which may actually be unfortunate as well. Ms Jolie said it was the right decision for her, but it was not right for every woman, and I think that’s absolutely correct. Many women who chose to get a bilateral mastectomy, if they were to sit back, think, and understand everything about it they might choose a different method of treating the present breast cancer.
Berger: Does anybody else have anything else they’d like to share on that?
Larsen-Haidle: I have to echo what everyone has said. Ms Jolie’s announcement, which was courageous of her, resulted in a marked increase in the number of calls coming into our office but also in our referring provider network. Most of those calls were women who were what I’ll call “the worried well,” who had heard about the story and had a concern, but in most cases DNA testing would not have been appropriate for them. The genetic counseling realm helped to put that risk into perspective for them, and to help them understand why testing was not indicated for their family even though it was necessary for Ms Jolie’s family. Our volume has sustained about 2½-fold higher than prior to her announcement. Her story raised a lot of general awareness.
I have to agree with what Ms Matloff and Dr Brawley and Dr Finley said about the Supreme Court decision. For us the testing choices have changed dramatically.It becomes important for us to look carefully at each of these panels and ask, what are the genes that are analyzed? How effectively are each of those genes analyzed, compared with what panel fits best with the person that’s sitting in front of me? … So the costs of testing have gone down, but it’s also allowed us to expand and address and on the same test another 20 to 25% of families that have an inherited risk. From the genetic counselor’s standpoint, over the last year we’ve done some careful work trying to identify data. There are some studies out there that do indicate that when the genetic
counselor is the person evaluating that family history, that we will identify risk factors that might be missed by other providers without specialized training in genetics. We have to identify those patients and, as Dr Brawley had mentioned, they may not need BRCA testing. They may need testing for Lynch or P53 or some other gene.
Berger: That’s a great lead-in to my next question: Let’s talk about the providers for a moment. How are they getting their education? How are they keeping up? There may be a number of providers that the patient population would be seeing, whether it’s a nurse practitioner, a primary care doctor, an OB-GYN, or potentially somebody with greater specialty. But in the general healthcare area of the family physician, the PCP, or the nurse practitioner, is there confusion? How are they reacting to everything out there?
Brawley: I practice as a medical oncologist, and I’m a firm believer that there are so many things out there that no one person can master everything. So I think it’s impossible for a generalist to understand everything that a person needs to understand about genetic counseling or about genetic testing. That’s among the reasons I think it is very important for most of us, including myself, to refer patients to a genetic counselor for a conversation, even if that conversation has to happen over a telephone. A genetic counselor brings something to the table that many of us physicians simply cannot.
Nagy: Think about the training. Within the medical school curricula now there is more focus on genetics. There is more than there was maybe 10 years ago.
Berger: That’s good to know, because when I trained there was very little, but that was in the dark ages.
Nagy: And it’s gotten better over the past 5 years or so; there’s more curriculum within the medical schools on this, but it’s not enough to really dive deep into the nitty-gritty of the subject. But it’s enough to at least make those medical students aware of the complexity, which is a good thing. Unfortunately for physicians who are already in practice, it’s really up to them to seek out CME education that would give them a background on genetics.
The most unfortunate circumstances occur when a laboratory that may profit from that physician or in a test is providing “education and training.” What we’re finding is that the education is really geared to the test, and it’s not geared to the family history. So they’re telling the physician how to order the test and when to order the test, but they’re not saying when it might not be appropriate. That’s obviously an issue, and it weaves into this whole story of inappropriate testing and improper utilization of tests, unfortunately.
Berger: So is it up to the patients to say to their doctor, “Is this appropriate?” There are a number of places today where we’ve said the consumer has to be more educated, and has to be the leader of his or her own healthcare. Is this one of those places where it’s important?
Nagy: I definitely think it’s important. But I also think that some patients won’t bring that subject up with their physician, for whatever reason. It may be the physician’s responsibility to collect a family history in that office appointment and then know when it would be appropriate to refer the patient to a genetic counselor or geneticist.
PDF is available on the last page.