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Cancer Genetic Counselors Report Practice Changes After AMP v. Myriad Court Decision

NEW YORK (GenomeWeb) – Genetic counselors in the cancer field experienced changes to their practice soon after a Supreme Court ruling that effectively expanded the types of genetic tests available for assessing individuals' risk of hereditary breast and ovarian cancer (HBOC), results from a recently published survey suggest.

In the Journal of Genetic Counseling last week, researchers from NextGxDx (now Concert Genetics), Geisinger Health System, and elsewhere presented findings from a survey performed in November 2013, which polled 152 genetic counselors about changes in genetic testing and counseling practices following the US Supreme Court decision in the Association for Molecular Pathology v. Myriad case earlier that year.

Results of the survey suggest changes in the HBOC genetic testing landscape — which have occurred since related counseling guidelines were established by the National Society of Genetic Counselors (NSGC) in late 2012 — are impacting how genetic counselors  present such tests to patients. For example, the team saw hints that genetic counselors provide more information about test uncertainty to patients, sometimes at the expense of in-depth information on any one test, while spending more time overall with each patient.

"This study shows that cancer genetic counselors are adapting quickly to genetic testing changes, but with wide variability," corresponding author Gillian Hooker, vice president of clinical development at Concert Genetics, and her co-authors wrote. "Findings suggest future research to elucidate clinicians' and patients' preferences for guidance on the clinical implementation of next-generation sequencing."

For their cross-sectional survey, the researchers approached more than 750 individuals from a NSGC cancer special interest group, asking for input on hypothetical vignettes involving individuals with breast cancer or colon cancer or a personal or family history of such disease.

In particular, the investigators set out to see whether the AMP v. Myriad case had an impact on the type of tests selected for first-line and reflex testing for individuals who may be at risk of developing breast or ovarian cancer. They were also interested in exploring ways in which multi-gene panels have altered test selection, interpretation, and counseling approaches for such individuals, if at all.

The team reported that some 99 percent of the 152 survey respondents acknowledged changes to their practice in the year leading up to the November, 2013 survey, while 94 percent pointed to a shift in the types of tests ordered for HBOC. Most survey respondents said they had seen a rise in the number of HBOC patient visits. And among the participants who provided more detail for the survey's open-ended question, the researchers noted that genetic counselors described changes in the content and length of counseling sessions, along with shifts in the types of tests offered and the labs selected for those tests.

Such changes are expected to have a wide range of implications for patients, counselors, researchers, and the health system, the authors explained. For example, they noted that results from the survey raise issues related to reimbursement for genetic counselors, who may spend more time explaining the ins and outs of gene panels and the interpretation of variants gleaned from them.

"Reflecting the broader scope of new tests and rates of variants of uncertain significance as high as [40 percent], counselors are spending more time talking about uncertainty," the authors wrote. "They also reported that they are spending more time in general with patients — in pre-test sessions, in follow up sessions, and on the phone." 

As such, they said, the study "raises questions about how [genetic counselors' additional time] should be reimbursed by third  party payers, or whether current models can sustain this level of service."