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Aetna Senior Medical Director Discusses Genetic Counseling Program for Cancer

Aetna last month began offering confidential telephone and web-based genetic counseling services for cancer patients belonging to plans that cover genetic testing.
The service for breast, ovarian, and colorectal cancer is the latest example of why the national insurer, which covers nearly 15 million lives, is considered in the industry to be a pioneer in the area of genomics-based personalized-medicine policies.
As early as 1998, Aetna developed a program of coverage policies, physician education, and privacy provisions around BRCA testing for inherited breast and ovarian cancer. Four years later, the company became the first insurer to implement a privacy policy for genetic data. The policy was adopted by America’s Health Insurance Plans and has became the industry standard.
In 2006, Aetna followed National Institutes of Health treatment guidelines and incorporated genetic testing into its hepatitis C clinical-management program. And, last year, the firm adopted an employment genetic nondiscrimination policy.
However, while Aetna has championed many components of personalized medicine, the insurer also has some of the toughest evidence criteria that genetic tests must meet for coverage [see PGx Reporter 12-19-2007]. Some of Aetna’s coverage policies for genetic tests can be read here.
Joanne Armstrong is Aetna’s senior medical director and an architect of the company’s genetic-counseling program. She spoke with Pharmacogenomics Reporter last month about the insurer’s aim to help its members and physicians have more informed conversations about gene-based testing, and explained how Aetna makes decisions to cover such tests.
Below is an edited transcript of the interview.

What motivated Aetna to launch the genetic-counseling program?
There is much more genetic-based technology that is out in the market; tests and some genetic based technologies. There are also problems in access to trained physicians who can help patients understand how to use [genetic tests] effectively. Even among the physicians who are using [them] there is a lot of concern about their own knowledge base and their ability to use [the tests]. It’s largely an access issue and a medical-appropriateness issue.
We know from published surveys that have asked primary-care physicians to rate their own knowledge of genetics. Something in the neighborhood of 70 percent consider their knowledge inadequate. Primary-care physicians are increasingly the frontline physicians who are using these technologies and translating them into clinical decisions. So given the fact that many of [these] physicians … by their own report are not prepared, we know through consumer reports that’s the same conversation that consumers are not prepared to use these technologies effectively.
It’s very complex stuff. … And the larger issue is, ‘What’s the access to care?’ There are in the neighborhood of 2,000 trained genetics counselors in the country. Most of them are employed inside academic medical centers. So what that means is in order to get genetic counseling so you can get the information to get the best information to make an informed decision, consumers have to find this very small network of trained clinicians.
So that was basically our motivation: Trying to put decision-support tools in place so that consumers can make the best decisions. And we picked cancer [because] some of the diagnostic tests that are out there that are very complex are in the area of cancer genetics: the BRCA and the HPNCC, specifically. They are complicated tests; those are the tests that are on the market, and [genetic counseling] is obviously very important to understanding what the test can do and what the test cannot do.
The other issue around genetic counseling is not just to help support whether or not to get the test … [but] to help with how to use the test. And there is also a lot of wellness information that’s gleaned from genetic counseling that is just not making it into a primary-care conversation.
Such as?
For example, the ability of birth control pills to reduce the risk of ovarian cancer in women with elevated risk. Also, information such as women with increased risk for inherited breast cancer would benefit from breast MRI versus conventional mammography. [Also,] things like families with genetic risk for colon cancer are recommended to begin early screening, much earlier than what the general population is recommended for.
Would the counseling also help Aetna decide who gets reimbursed?
The primary purpose of this is to help patients understand their personal risk and their familial risk; what contribution family history plays in these medical problems; [and] to help craft prevention strategies or optimize wellness. If those counseling conversations ultimately recommend that a test be done, those tests are already covered benefits for Aetna members; what we’re trying to do is to make sure patients have the right information to make the best decision, and that those decisions are evidence-based.
Aetna has said that conversations with counselors are confidential. But if a patient reveals the information, could Aetna use it to drop coverage?
The patients who go to genetic counseling, that conversation is confidential and we don’t get the results of it. Period. There is nothing that comes back to us.
BRCA [testing,] for example, [is] already on our pre-certification list [and] we have a process that basically asks the physician who orders the test if the patient meets the medical appropriateness criteria that have been articulated by the National Cancer Care Network.
So, that’s true, [a coverage decision can be made if] a patient decides to go through medical counseling and the counselor helps the patient understand the risk and makes a joint recommendation for testing. Or it can go through the status quo which requires a physician, often a primary-care physician, to make a recommendation for genetic testing.
So the medical-appropriateness decision would not be made by the genetic counselor, but by the physician?
With counseling, members can go directly to this counseling site. So it can be a self-initiated counseling. If there is a recommendation [for genetic testing] after that counseling is completed, and the recommendation by the counselor is that the member has a high enough risk based on the personal and family factors … that testing must be ordered by their primary care physician.
How is the decision to conduct a genetic test get transferred from the counselor to the physician?
The counselor asks that patient who their primary care physician is. And the counseling generates a formal consult, just as you’d get if you had a face-to-face counseling.
The patient goes to the counselor and the counselor goes through a formal counseling session, three generations of pedigrees, the whole nine yards. And what is generated from that telephonic visit is a printed consult. Then that consult is sent to the members’ primary-care physician, if the member wants that. If there is a recommendation for testing, the only way a test would be considered is if the primary-care doctor requests it.
So this is not a process that allows patient-initiated genetic testing. And I think that’s very important.
[Contents of the counseling sessions have] no impact on Aetna’s decision to grant insurance. Aetna has had a policy in place since 2002 that speaks to the appropriate use of genetic data, and what we consider to be the inappropriate use of genetic data. And we do not use predictive genetic information for underwriting, for application to health plans. …
In trying to get at this question of whether consumers are concerned about health plans or their employers’ function in this area, we surveyed Aetna employees and their dependents … about their confidence with both the health plan facilitating genetic counseling and an employer facilitating genetic counseling. The satisfaction rates that we got were very high. When asked to rate their satisfaction with Aetna, as an insurer [providing genetic counseling], it was something like 100 percent; that is, they were confident about the protection of their genetic data. And as an employer, it was something like 94 percent. So it was quite high.
But the main thing we learned from [that survey] is that the conversation [around genetic counseling] is just not taking place due to the complexity and the time it takes to go through a three-generation pedigree. It’s very labor intensive and most people are not trained to do it.
Would Aetna also pay for a genetic test for a policyholder’s family member who is not covered under the plan?
We do cover it if another family member who is not our member is really the appropriate person for testing, and those test results benefit our member. So, as you know, there are times when our member would be appropriate for testing. [Here is] a scenario where we would cover a non-Aetna member … because the test results would benefit our member: If a female member’s mother has had … breast cancer, [she] is higher up the pedigree tree [and is therefore] the locus of greatest risk, the most information that can be obtained for a whole family is from the mother. [In this case Aetna would cover a gene test for the mother.]
Currently, Aetna is providing this counseling service only for cancer. Does it plan to extend it to other diseases or indications?
We don’t yet, although it makes intuitive sense that it could be translated to other clinical areas. We have rolled [the program out nationally] and we’re going to try to collect some key learnings about what works and what suits consumer needs and physician needs best and then think about how to adopt it for other clinical areas.

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