University of Michigan and CS Mott Children's Hospital, Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, Ann Arbor, Michigan.
Munson Healthcare Otsego Memorial Hospital, Gaylord, Michigan.
Pediatrics. 2022 Jun 1;149(6). doi: 10.1542/peds.2021-055368.
Congenital cytomegalovirus (cCMV) affects approximately 1 in every 200 US infants and can be associated with long-term neurodevelopmental sequelae, including sensorineural hearing loss, cerebral palsy, and intellectual disability. As cCMV is infrequently diagnosed based on clinical suspicion alone, newborn cCMV screening programs have been gaining traction, especially hearing-targeted programs which only test infants who fail their newborn hearing screen. cCMV screening programs raise unique ethical dilemmas of both under- and over-diagnosis of cCMV. In this Ethics Rounds, we present a case in which the parents of a child with symptomatic cCMV that was not recognized until 4 years of age urge the birth hospital to implement a cCMV screening program. We then ask a parent-clinician, a medical ethicist and pediatrician, and a primary care pediatrician to comment on how they would advise the hospital administration and consider the ethical and clinical implications of a cCMV screening program. The commentaries herein arrive at differing conclusions about cCMV screening. The first highlights the developmental advantages of early cCMV detection, supporting a broad approach to treatment beyond antiviral medication alone. The second explores cCMV screening from the perspective of newborn screening as a public health program, noting shortcomings in available testing platforms, and raising concerns about overdiagnosis and overtreatment. The final commentary challenges the risks of undue parental anxiety and vulnerable child syndrome as a barrier to screening, instead considering cCMV screening as a controlled opportunity to understand and support the experiences of affected children and their families.
先天性巨细胞病毒（cCMV）在美国约影响每 200 名婴儿中的 1 名，可导致长期神经发育后遗症，包括感觉神经性听力损失、脑瘫和智力残疾。由于仅凭临床怀疑很少能诊断出 cCMV，因此新生儿 cCMV 筛查计划逐渐普及，特别是针对听力的筛查计划，仅对未通过新生儿听力筛查的婴儿进行检测。cCMV 筛查计划带来了 cCMV 诊断不足和过度诊断的独特伦理困境。在本期伦理讨论中，我们介绍了一个病例，一名儿童患有有症状的 cCMV，但直到 4 岁才被发现，其父母敦促出生医院实施 cCMV 筛查计划。然后，我们请一位家长-临床医生、一位医学伦理学家和儿科医生以及一位初级保健儿科医生对如何向医院管理部门提供建议以及考虑 cCMV 筛查计划的伦理和临床意义进行评论。这些评论对 cCMV 筛查得出了不同的结论。第一篇评论强调了早期 cCMV 检测的发育优势，支持在抗病毒药物治疗之外采取广泛的治疗方法。第二篇评论从作为公共卫生计划的新生儿筛查的角度探讨了 cCMV 筛查，指出了现有检测平台的缺陷，并对过度诊断和过度治疗表示担忧。最后一篇评论质疑因父母过度焦虑和弱势儿童综合征而阻碍筛查的风险，而是考虑将 cCMV 筛查作为一个机会，以了解和支持受影响儿童及其家庭的经历。
