ELSIcon2022 • Paper • May 27, 2022
Janet Malek, Jill Robinson, Hadley Stevens Smith, Amanda Gutierrez, Sarah Classen, Sarah Scollon, D. Will Parsons, Sharon Plon, Amy McGuire
The ongoing Texas KidsCanSeq Study, part of the NIH Clinical Sequencing Evidence-Generating Research consortium, is designed to integrate genomic sequencing (GS) into pediatric cancer care. One goal is to better understand patients’ and families’ perspectives on this technology. Parents are surveyed within a week of consenting to the study (n=585) and again six months after receiving their child’s germline results disclosure (n=135 as of November, 2021). Questions focus on expected (“pre”) and actual (“post”) usefulness, as well as perceived risks and benefits of sequencing. Parents were enrolled from six different clinical sites across Texas and were diverse in terms of ethnicity and race, socioeconomic status, insurance status, language preference, and residence in HRSA-designated medically underserved areas, with 43% of parents self-describing as Hispanic/Latino and 12% as Black/African American.
Six months after testing, parents found GS less useful than expected at baseline for measures of both clinical and non-clinical utility. This trend was more pronounced for clinical utility items (e.g., identify cause for child’s cancer, 90% pre vs. 20% post) than for those reflecting non-clinical utility (e.g., gave information they wanted, 90% pre vs. 70% post). In contrast, more parents at post-disclosure reported that the overall benefits of GS outweighed its risks than at baseline (86% post vs. 79% pre). Updated analyses and possible demographic associations in participants’ responses will be included in the presentation. An understanding of the utility and benefits parents may expect and experience from GS is necessary for ethical implementation of this technology in pediatric clinical care.