Genetic Testing Should Come With Counseling: American Cancer Society CMO, Supreme Court Plaintiff Among Experts Who Warn of Consumer Risks
Published Online: December 13, 2013
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 http://www.ajmc.com/ajmc-tv/paneldiscussion/genetic-testing.
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.
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