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Genetic Testing Should Come With Counseling: American Cancer Society CMO, Supreme Court Plaintiff Among Experts Who Warn of Consumer Risks

Produced by Nicole Beagin
This fall, The American Journal of Managed Care convened a panel of leading medical professionals and genetic counselors to discuss how the exploding field of genetic testing is affecting cancer prevention, diagnosis, and treatment. Jan Berger, MD, MJ, president & CEO, Health Intelligence Partners, and editor-in-chief, The American Journal of Pharmacy Benefits, served as the moderator for a wide-ranging discussion, including issues that have arisen since June 13, 2013, when the US Supreme Court opened the door to competition in genetic testing with its Myriad decision.

Panelists included Otis Brawley, MD, chief medical officer, American Cancer Society; David H. Finley, MD, FACS, national medical officer, enterprise affordability and policy, Cigna; Joy Larsen-Haidle, MS, genetic counselor, Hubert H. Humphrey Cancer Center; Ellen T. Matloff, MS, research scientist, Department of Genetics and director, Cancer Genetic Counseling, Yale Cancer Center; and Rebecca Nagy, MS, genetic counselor and president, National Society of Genetic Counselors.

The following transcript has been edited for clarity, style, and length. To hear the full discussion, please visit

Jan Berger, MD, MJ: Let’s focus first on the unmet needs and challenges. What is the current uptake of genetic testing? We see increased utilization and increased availability. So are we seeing greater use? Is it in the employer market? Is it in the health plan market? Who’s leading the charge in this area? Ellen Matloff, would you get us started?

Ellen Matloff, MS: I think the other genetic counselors on this panel have been much more involved in this area than I have to date, but my group has been able to document over the years some of the mistakes that are being made in genetic testing and also in prophylactic surgery, as well as surveillance for patients who aren’t getting the genetic counselling they need by a certified provider—both before and after having testing.

Berger: Joy Larsen-Haidle, can you share what are you seeing as a genetic counsellor? Are you seeing an increased uptick in genetic testing?

Joy Larsen-Haidle, MS: Yes, I am. Since the end of June there’s been a significant increase in the number of requests for genetic counselling and genetic testing, as well as differences in the type of testing that are available. I’ve been a genetic counselor for 18 years, and it’s been a lovely experience to watch that trend where genetic counselors have become more integrated in routine medical care. We are part of that conversation when patients and physicians are developing their care plan, and I think that trend will continue. With the court decision  and the media attention around BRCA testing that trend will likely continue.

Berger: Dr Brawley, how are you all at the American Cancer Society both impacted by and impacting the current uptick?

Otis Brawley, MD: “Uptick” is actually a very good word. We’ve received many more calls to our 800-number from people seeking information. We have advised people to get genetic counselling before getting genetic testing. One of the tendencies that we’re seeing is that people who want genetic testing without the counseling. They sometimes want it ask for a specific test, and we have people who probably don’t need testing getting BRCA testing. There are those being tested for BRCA who probably should be tested for Li-Fraumini syndrome or other syndromes.

Berger: That’s interesting that you brought up the counselling before testing. Dr Finley, you know I can’t let you go without asking this: Cigna has made a precedent setting move of requiring— not just offering but requiring—genetic counselling by a certified provider prior to breast and colon cancer genetic testing. There’s been some noise to this and a bit of pushback. Do you believe other insurers will follow in your footsteps? And also, are there enough genetic counselors to meet the need for this protocol?

David Finley, MD: I don’t have a hope whether the other insurers follow or don’t follow us. It’s not my primary or even secondary focus. I just hope that Cigna’s program will succeed in steering people toward genetic counseling and better care. Let me comment on the trend: As a payer we have the advantage of being able to look at claims history and see what’s happening in genetic testing. Our claims data show about a 15% annual uptick in genetic testing. And when I say “about,” it’s because of the change in coding that’s occurred. So, it is an estimate as the coding has changes from 2011 to 2012 to 2013. Our best estimate is a 15% uptick per year. I’m sorry, the last part of your question?

Berger: I asked about the number of genetic counselors.

Finley: I think there are better experts on this panel to answer the question, but the way Cigna looks at it, in some markets, the number of genetic counselors is adequate. In certain markets it’s not. I don’t think it’s one size fits all. In order to make sure that our Cigna customers can get the genetic counseling they need, we have contracted with a genetic counseling firm, IMD, that does these consultations telephonically; if there is a Cigna customer in a market where they cannot get a face-to-face appointment, that person can take advantage of the telephonic counselling with board-certified genetic counselors.

Brawley: If I can just say why women should talk to a genetic counselor before being tested—men for that matter, too, because occasionally we have men who want testing. As a physician, I have had to deal with women who have been tested and ended up with mutations of unknown significance, as opposed to a mutation that clearly increases significance by 40% or 80%. And what these women with mutations of unknown significance go through is just terrible—the emotional and mental anguish is terrible. Some of them actually force doctors to do bilateral mastectomies; in at least 3 instances I know of women have gone through this, and 3, 4, 5 years later what was a mutation of unknown significance is now known to be a mutation of no significance.

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

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