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RESEARCH: Review of patients who actively decline recommended CIT post-test genetic counseling

Review of patients who actively decline recommended CIT post-test genetic counseling 

Authors: Robin H. King, MS, CGC, Stephanie Ashley, MGC, CGC, Nori Williams, MS, CGC, Paldeep S. Atwal, MD


Introduction: PWNHealth seeks to both improve access to testing and to improve patient understanding of the results by providing medical oversight and clinical support of consumer-initiated genetic testing (CIT). In some situations, the patient is required to schedule a telehealth session with a PWN genetic counselor (GC) before they are able to access their results. The fee is included in the cost of the test. However, patients are given the option to electronically consent to decline that session.


Purpose: We sought to evaluate the demographics and motivations of those who actively decline genetic counseling to see what can we learn about this population.


Methods: Responses from consumers who declined sessions with a PWN GC between 4/22/19 – 5/4/20 were collated and anonymized. Data analysis was performed to determine if any specific variables may contribute to making a consumer more likely to decline a recommended consult.


Results: 59 out of 965 (6.1%) patients declined the offered consult. Men and women declined at a similar rate (7% and 6%, respectively). Those between the ages of 20-39 were slightly more likely to decline (8%) than the other age groups: 0-19 (0%), 40-59 (5%), 60-79 (6%), and 80-99 (6%). Those who had recommended consults for a pharmacogenetic (PGx) test result (n=573) were less likely to decline (3%) than those with results from a carrier screen (n=6) or healthy adult panel (n=385) (17% and 10%, respectively).12 (20%) initially scheduled a consult, which released their results, but then canceled or no-showed before ultimately declining. Of 22 patients that were asked for their reasons for declining, the most common response was the desire to review their results before deciding if they wanted to speak with a GC (n=13/28, 46%). 7 (25%) reported they planned to discuss the results with their physician, 3 (11%) that they are concerned with the cost of the session and 2 (7%) that they plan to discuss the results with their own GC.


Discussion/Conclusion: While it is encouraging that a low number of patients are declining the consults with a GC, we do not have a way to measure whether patients are truly understanding the implications of their results. Only 1 of the 13 patients (7.7%) who wanted to review their results first went on to schedule a consult, despite having actionable results with serious health implications. Further research is warranted to determine why these groups are more likely to decline consults and, importantly, to learn whether those that decline counseling get the appropriate medical follow-up for these results.