Genetic Testing Should Come With Counseling: American Cancer Society CMO, Supreme Court Plaintiff Among Experts Who Warn of Consumer Risks | Page 2
Published Online: December 13, 2013
Produced by Nicole Beagin
Then you have the other issue that I talked about earlier: those who, based on family history, clearly have a genetic pattern that might be a Lynch syndrome or might be a Li-Fraumini syndrome, but because they’ve heard about BRCA they insist on getting the BRCA testing. They don’t get tested for these other things. If I could just add one more thing: I agree with everything that you said, Dr Finley, and that’s one of the motivators behind our program. The other misunderstanding that I believe is out there, but I’d like your comment, is it true that some women misunderstand what the BRCA is and what it does, and they feel that if they’re negative for BRCA they don’t have to worry about getting breast cancer?
Finley: You’re absolutely correct; 95% of women who get breast cancer don’t have any of these mutations, and then there are mutations out there that we don’t know about yet. I can remember people were concerned when we had BRCA1, and women were tested for BRCA1 and they were so reassured that they tested negative for BRCA1, and then a few months later we had BRCA2;
those same women went through the same thing again and finally were found to be positive for BRCA2. There are other mutations out there that we don’t know about yet; and 95% of breast cancers are not due to genetic inheritance.
Berger: Those comments are all very, very important; they help us to think through a logical pathway for both educating and utilizing counselors in an appropriate way. I want to reach out to our counselors and ask: being involved with genetic counselors and being genetic counselors, first, is there a concern regarding the availability and number? Second, I want to bring up the telephonic genetic counseling and your thoughts on that.
Larsen-Haidle: Those are very good questions. As Dr Finley had alluded to, in certain markets in the United States there are many genetic counselors. In areas where the coverage isn’t what we would like, such as rural areas or certain states, I think the numbers do present a problem. But being able to use the telephone genetic counseling or even tele-genetic services has started to bring down that type of a barrier. Patients don’t have to worry about distance; they can still reach a qualified provider to do that pre-test/posttest counseling and have access to someone to appropriately interpret that results. We do see a difference, at least in my state, between the patients who are in rural areas and their level of resources and access versus the patients that are in metropolitan areas. I think it is an important resource to allow counselors to visit with the patient over the phone and still be reimbursed for that time.
Rebecca Nagy, MS: I agree. The other model that we’ve adopted is handling tele-genetic counseling by Skype. Our clinic can Skype to several local hospitals, where the patient can come in and sit with the healthcare provider, such as a nurse, who is their local contact person and has some limited expertise in genetics. It offers the benefit of having somebody local—and I think a lot of people in rural areas especially feel comfortable having that contact at a hospital that they’re familiar with, as well as a nurse who can help with referrals, while still getting the genetic counseling expertise through the phone or the computer. In terms of quality, I think there is an impression out there to this day that telephone counseling is not as effective as in-person counseling, and we genetic counselors worried about that for a long time. It’s been very well studied.
When you look at patient satisfaction and patient knowledge, there really isn’t significant difference between the patient sitting with you versus being on the telephone. Now, there probably are some areas where it’s better to be in person. Some pieces of that counseling occur more effectively when in person. But in terms of how the patients view it, they feel pretty satisfied by the telephone experience.
Berger: That’s great to know. I want to turn for a moment to the Supreme Court decision in the Myriad case on June 13. I would ask: What have you seen as an impact on what each of you all do? I’d like each of you to comment on this. The press covered the Supreme Court ruling somewhat, but they did more with Angelina Jolie’s disclosure (about having a bilateral mastectomy after BRCA testing). Can each of you discuss what the impact of these events has been?
Matloff: We had an unprecedented 3 months because the Supreme Court case went to trial in April, Angelina Jolie made her disclosure in May, and then the Supreme Court decision came out in June. We had a 40% increase in phone calls to our center during this period of time. One of my predictions before the ruling was that if the Supreme Court banned gene patents that within
3 months other laboratories would come forward and offer better, cheaper, faster testing. But wasn’t I surprised when we started getting e-mail advertisements within 5 hours of this decision! Other labs had been anticipating this, and they were up and running, not only offering cheaper BRCA testing, but much more comprehensive, better testing. And all of these labs were also offering (to test for) other genes. So as we’ve discussed, BRCA1 and BRCA2 are not the only 2 genes associated with breast cancer development; some of these panels now include, believe it or not, 40 genes that can be associated in breast cancer development. In my view, having also been in the field for 18 years, the entire playing field changed very, very quickly. We suddenly had all of these options—we could order more testing for less money or certainly the same amount of money that we were taking for BRCA analysis from Myriad. This is both a good and a bad thing.
One of the things that I’ve found is that we had meetings with our whole staff after doing hours of research into all of the options. What each lab was offering, how much it would cost, what the turnaround time would be, and what techniques they were using. What are the pros and cons of this testing for genes? Some genes are clinically actionable, but others are not, so perhaps we don’t want to know about them yet. And I thought to myself, “If we’re struggling through this, how is the facility or an independent physician’s office with no information about genetics going to now make these decisions—let alone interpret the results?”
Berger: Interesting. What about some of the rest of you all?
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