The Life of a Genetic Counselor: Providing Patient Education, Navigating Insurance, and Challenges in Choosing Tests

Recently I got a glimpse of life as a genetic counselor when I spoke with Kerry Kingham from the Stanford Cancer Center. So many of us in the genomics community come from the worlds of technology and science — I thought enlightenbio readers might find this clinical information as useful as I did.

Kerry started out in biology but earned her master’s degree in genetic counseling at Berkeley, a career path that requires board certification, state licensing, and ongoing education. Her job entails what you might expect from genetic counseling: providing education to patients to help make informed decisions on genetic testing, including dealing with insurance companies and other logistics, as well as teaching students.

Typically, Kerry’s workday starts at 8:30 am, when she meets with the rest of the team to discuss the day’s cases. She sees about 25 to 30 patients per month, a significant increase even from last year’s numbers. Stanford Hospitals & Clinics alone has seen a doubling in the number of patients between October 2013 and February 2014 (from approximately 60 to more than 100 patients in six months and this at the Cancer Center alone). Kerry attributes much of that to the Angelina Jolie effect: the actress’s decision to go public about her BRCA status and prophylactic double mastectomy, which has encouraged many more people to find out about their own genetic information. Most patients are referred to the clinic by their physician and some are self-referred and are seen by a genetic counselor alone or with a genetic counselor and a physician.

Kerry tells me she sees all types of patients – new and past diagnosis patients, patients with a family history – including entire families, who come for one or two visits and spend up to two hours sharing their medical history and speaking with her about what they hope to learn through genetic testing. Because she’s in the Bay Area, Kerry believes many of her patients are more educated about genetics and testing options than the general population.

Naturally, one of the most important things Kerry does is to present the options for genetic testing. For certain cases, Kerry selects gene panel tests instead of single-gene tests, but says that when she goes over possible results with the patient, she focuses on the most likely genes that may explain that patient’s particular personal and family history. Actual test selection is driven by turn-around time and type of genes/mutations that need to be tested as well as insurance requirements. Two major considerations are the number of variants that will come back with unknown significance, and the patient’s comfort level with ambiguity (e.g. with a TP53 mutation one has to have a high comfort level to understand that for some of the cancers with this outcome, little can be done and early detection methods are not yet proven). There’s so much still unknown about genetic data; it’s a real concern for Kerry, who has to find a way to explain all of the results to her patients, even when those results are little more than question marks.

Since the Supreme Court decision on gene patenting, more labs (including Ambry Genetics, GeneDx, and Invitae, among others) are offering BRCA1 and BRCA2 tests, so Kerry has done her due diligence to determine the pros and cons of each provider’s test and final report. Though there are some differences in how the results are delivered by the different labs, they all include a “human-generated” summary and data tables listing all the variants with their annotations. I was surprised to learn that after she receives a lab report, she often looks up variant data herself or even digs into SIFT or Polyphen for more information. Kerry told me that despite the fact she is comfortable with the returned test results, she usually does additional work herself in looking up some of the results before she feels comfortable sitting down with a patient to go over results.

When Kerry does have a full report (delivered via a secure, password-protected, certified portal for most of the labs), there are a number of factors she considers as she relays information to the patient. Her cardinal rule: never leave diagnostic information in a voicemail. In speaking with patients, she has to determine whether the test results offer a clear direction — such as the prophylactic removal of ovaries — or are more vague, possibly requiring ongoing screening rather than a specific operation or treatment. At this point guidelines/recommendations are predominantly only available with BRCA1 and BRCA2 genes (little is known for many of the other genes tested, with the exception of a few). Most labs only bill for BRCA1 and BRCA2 gene testing, but provide via their panels other additional gene testing, which is carefully discussed with the patient before test ordering.

Another element of the job is dealing with the insurance minefield. Kerry tells me that some insurance companies allow genetic counselors to bill directly, but Medicare does not yet view them as allied healthcare providers so billing is complex and must be handled differently. (The National Society of Genetic Counselors is actively lobbying Congress to change this rule.) While insurance never influences her choice of a genetic test, various companies reimburse differently for different tests, so it can be challenging for patients trying to navigate low-cost options.

Many thanks to Kerry for taking the time to give me this great view of her world. I have a new appreciation for the challenges of being a genetic counselor!

Kerry Kingham’s publication list.