“…Existing areas of scholarly emphasis include assent and informed parental permission (consent), [33][34][35][36][37] early-phase oncology trials, [38][39][40][41] genomics, [42][43][44][45][46][47] communication, 48,49 chemotherapy shortages, [50][51][52][53] and refusal of recommended oncology treatment. [54][55][56][57][58] At present, ethics literature germane to pediatric hematologic disorders has primarily examined newborn screening, 59 preimplantation genetic testing, [60][61][62][63] genetic counseling, 64,65 and reproductive decision-making [66][67][68] for genetic diseases like thalassemia, SCD, and glucose-6-phosphate dehydrogenase deficiency. Recent years have seen an expanding focus on ethical issues related to genetic/genomic sequencing in hematologic disorders, 69,70 and on gene editing, 71 particularly related to SCD.…”