Abstract
Approximately one percent of all infants born in the United States every year are conceived using assisted reproductive technology (ART). Although some risks associated with ART have been established, other potential risks are not yet fully understood. The purpose of this study was to ascertain what genetic counselors are communicating to patients regarding ART-related risks. We recruited 161 genetic counselors through NSGC and CAGC e-mail lists for participation in an online, anonymous survey. There was considerable variability in how often genetic counselors, even from the same practice area, discussed any risks of ART. Overall, participants who worked in prenatal or ART settings reported that they discussed the risks of ART significantly more often than participants from cancer, pediatric, adult or specialty clinics. In accordance with published guidelines, participants in all practice areas were more likely to initiate discussions about multiple gestation, congenital structural abnormalities and chromosome abnormalities. However, participants were also more likely to bring up risks of imprinting disorders, despite a lack of conclusive data regarding this risk and less likely to bring up obstetrical and perinatal complications even though these risks have been well-established. According to participant responses, there was no significant difference between the overall frequency that patients in different practice areas asked about any risks of ART. There was variation, however, regarding how often patients in different practice areas asked about specific risks of ART. Patients reportedly asked about risks to the mother’s long-term health more frequently in adult/pediatric/cancer/ specialty clinic settings than in prenatal/ART settings, but were more likely to ask about congenital structural abnormalities and multiple gestation in prenatal/ART settings. These findings suggest a need for genetic counselors in different practice areas to increasingly provide patients with consistent and up-to-date information regarding the risks of ART that is also reflective of their patients’ concerns.