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Online Tool to Select Secondary Findings May Shorten Genetic Counseling Sessions

NEW YORK – An interactive online tool to select secondary findings from genome sequencing for return may help shorten the time patients spend speaking with time-strapped genetic counselors, a new study has found.

As genome sequencing becomes more prevalent in the clinic, patients have to be counselled regarding not only why they are undergoing sequencing, but also about any secondary findings that testing might uncover. To meet this increased demand for genetic counselors, researchers and companies are exploring various tools to supplement traditional genetic counseling, including chatbots, videos, and online tools. 

In a new study, researchers from the University of Toronto examined the effectiveness of their online decision aid, dubbed Genomics ADvISER, for pre-test counseling in a randomized hypothetical clinical study. As they reported in Genetics in Medicine this week, the researchers found that while their tool did not actually affect patients' decisional conflict, it did increase their knowledge and reduce the amount of time they spent later with a genetic counselor.

"Clinical guidelines recommend that clinicians engage in shared decision-making with patients about receiving secondary findings before sequencing," first author Yvonne Bombard from St. Michael's Hospital said in a statement "With existing constraints on genetic counselors' time, there is a need for less resource-intense ways to provide education and decision-making support." 

For their study, she and her colleagues recruited patients from four cancer genetic clinics at three hospitals in Toronto. Participants were randomized to either the control arm, in which they spoke with a genetic counselor to select what secondary findings they wanted to receive following genome sequencing, or to the intervention arm, in which they used the Genomics ADvISER to select what secondary findings they wanted to receive, in addition to a phone genetic counseling session. In all, 133 participants took part.

None of the patients actually underwent genomic sequencing or received secondary results; the study was hypothetical. 

The researchers suspected that their Genomics ADvISER tool would reduce patients' decisional conflict. But when they compared the two arms' scores on a measure gauging decisional conflict, they found little difference between them. They also reported no differences in anxiety, knowledge of sequencing limitations, preparation for decision making, and satisfaction with decision between the groups. 

However, the arm that used the Genomics ADvISER tool spent less time speaking with a genetic counselor than the counseling-only arm. On average, participants who used the Genomics ADvISER tool spent 24 fewer minutes speaking with genetic counselors than their counterparts in the other arm, 16 minutes and 40 minutes, respectively.

The intervention group also had higher knowledge of secondary findings, the researchers noted, and 91 percent of them said they would use the Genomics ADvISER tool when having to decide for real about secondary findings.

"As genomic sequencing becomes more popular in a variety of specialties, achieving improved genomics knowledge with fewer resources and significantly less time spent with genetic counselors is a crucial benefit the Genomics ADvISER provides," Bombard said.

The researchers noted a number of limitations with their study, such as that the participants were responding to a hypothetical scenario, but said that their findings suggest their tool could help free up genetic counselors' time and potentially reduce healthcare costs.