Survey Finds More Inquiries to Genetic Counselors, Including From the "Worried-Well"

Joy Larsen Haidle

A recent survey conducted by the National Society of Genetic Counselors (NSGC) showed a significant increase in patient calls and requests for testing and referrals from healthcare providers in the year following actress Angelina Jolie’s announcement of her BRCA mutation status and subsequent double mastectomy.

“The date of Angelina’s op-ed piece is kind of a benchmark, where from that day forward, there has been a large surge in the number of patients that were calling in as a result of her story, to either talk about testing or their family history,” said Joy Larsen Haidle, genetic counselor and president-elect of NSGC.

In fact, the survey reported that 90% of responders reported an increase in calls immediately after Jolie’s announcement, and 84% of responders reported either a significant increase, or increase in requests from “low-risk” patients.

Haidle says there was also an increase in “worried-well” callers, or healthy women without a family history that are concerned about their personal breast cancer risk. Thirty-one percent of survey responders reported an increase in this group of patients.

“This effect stayed for several months before it started to plateau,” Haidle said. “In some places it started to normalize again, but in other places it stayed at a plateau at a rate that was significantly higher than the baseline from the year prior.”

Haidle said that even though there have been other celebrities in the past that have told their stories about breast cancer and mastectomy, none have come close to the results seen by Jolie’s statement.

“I’ve been a genetic counselor for 19 years and in that time period…regardless of the amount of public awareness and education we tried to do, we did not get nearly half a fraction that she did,” Haidle said. “If you think of a woman who’s known for her beauty and her sexuality to go through with the bilateral mastectomy and then be willing to share that publicly, I think that was really empowering for a lot of women to say, ‘You know what, if she can do it, this option might be ok for me to think about too.’”

Although Jolie’s announcement has helped women feel empowered, some women reported feeling pressured to receive the same treatment as Jolie.

“There were so many good things that came from her op-ed piece, but there were also some misunderstandings,” Haidle said. “Part of it was that the only option was surgery and less emphasis was placed on the options to do heightened surveillance.”

Haidle also mentioned that the public was misinformed about what the genetic test actually tells patients and who needs to get tested.

In order to accommodate this increase and better educate the public, genetic counselors and clinics are implementing new practices for inquiries and referrals to help patients assess their need for testing.

Because of the volume of calls, genetic counselors implemented a screening process to talk on the phone before a meeting to determine if the patient would actually benefit from gene testing or not.

Genetic counselors also gathered family history over the phone and called to remind patients of their appointments in order to reduce the amount of missed appointments. Also, more genetic counselors were hired, and the documentation process was streamlined in order to reduce the amount of time of standard clinician notes.

Haidle said more and more patients are beginning to understand the role that genetic counselors play and hopes that the increased trend will continue to grow.

“Our job is to review really complicated medical information and explain it in a way that makes sense to the general public so they can be a little bit more empowered and proactive with their own healthcare,” she said. “Genetics touches every area of medicine. Until we have a higher [knowledge] base level across all of the healthcare practitioners, the involvement of the genetic counselor is going to be really crucial.”