Ethics Considerations Regarding Artificial Womb Technology for the Fetonate

The American Journal of Bioethics · 2022 · 86 citations

• Engineering ethics
• Psychology
• Engineering

Since the early 1980's, with the clinical advent of in vitro fertilization resulting in so-called "test tube babies," a wide array of ethical considerations and concerns regarding artificial womb technology (AWT) have been described. Recent breakthroughs in the development of extracorporeal neonatal life support by means of AWT have reinitiated ethical interest about this topic with a sense of urgency. Most of the recent ethical literature on the topic, however, pertains not to the more imminent scenario of a physiologically improved method of neonatal care through AWT, but instead to the remote scenario of "complete ectogenesis" that imagines human gestation occurring entirely outside of the womb. This scoping review of the ethical literature on AWT spans from more abstract concerns about complete ectogenesis to more immediate concerns about the soon-to-be-expected clinical life support of what we term the fetal neonate or fetonate. Within an organizing framework of different stages of human gestational development, from conception to the viable premature infant, we discuss both already identified and newly emerging ethical considerations and concerns regarding AWT and the care of the fetonate.

Association Between Children With Life-Threatening Conditions and Their Parents’ and Siblings’ Mental and Physical Health

JAMA Network Open · 2021 · 50 citations

• Medicine
• Pediatrics
• Psychiatry

Importance: Despite concerns regarding the potential deleterious physical and mental health outcomes among family members of a child with a life-threatening condition (LTC), few studies have examined empirical measures of health outcomes among these family members. Objectives: To examine whether mothers, fathers, sisters, and brothers of children with 1 of 4 types of pediatric LTCs have higher rates of health care encounters, diagnoses, and prescriptions compared with families of children without these conditions. Design, Setting, and Participants: This retrospective cohort study included US families with commercial insurance coverage from a single carrier. Children who had 1 of 4 LTCs (substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe neurologic impairment) were identified by a diagnosis in their insurance claim data between July 1, 2015, and June 30, 2016. Each case child and their family was matched with up to 4 control children and their families based on the age of the case and control children. Data were analyzed between August 2020 and March 2021. Exposures: Having a child or sibling with substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe and progressive neurologic impairment. Main Outcomes: Rates of occurrence of health care encounters, physical and mental health diagnoses, and physical and mental health medication prescriptions, identified from insurance claims data, were compared between case and control families using a multivariable negative binomial regression model. The statistical analysis adjusted for observed differences between case and control families and accounted for clustering at the family level. Results: The study included 25 528 children (6909 case children [27.1%] and 18 619 control children [72.9%]; median age, 6.0 years [IQR, 1-13 years]; 13 294 [52.1%] male), 43 357 parents (11 586 case parents [26.7%] and 31 771 control parents [73.3%]; mean [SD] age, 40.4 [8.1] years; 22 318 [51.5%] female), and 25 706 siblings (7664 case siblings [29.8%] and 18 042 control siblings [70.2%]; mean [SD] age, 12.1 [6.5] years; 13 114 [51.0%] male). Overall, case mothers had higher rates of the composite outcome of health care encounters, diagnoses, and prescriptions compared with control mothers (incident rate ratio [IRR], 1.61; 95% CI, 1.54-1.68), as did case fathers compared with control fathers (IRR, 1.55; 95% CI, 1.46-1.64). Sisters of children with LTCs had higher rates of the composite outcome compared with sisters of children without LTCs (IRR, 1.68; 95% CI, 1.55-1.82), as did brothers of children with LTCs compared with brothers of children without LTCs (IRR, 1.70; 95% CI, 1.56-1.85). Conclusions and Relevance: In this cohort study, mothers, fathers, sisters, and brothers who had a child or sibling with 1 of 4 types of LTCs had higher rates of health care encounters, diagnoses, and medication prescriptions compared with families who did not have a child with that condition. The findings suggest that family members of children with LTCs may experience poorer mental and physical health outcomes. Interventions for parents and siblings of children with LTCs that aim to safeguard their mental and physical well-being appear to be warranted.

The Daunting Problem of Medical Complexity and Housing Instability

PEDIATRICS · 2020 · 12 citations

• Medicine

* Abbreviations: CMC — : child or children with medical complexity CSHCN — : children with special health care needs SSI — : Supplemental Security Income For children with medical complexity (CMC) and technology dependence, living at home requires well-qualified caregivers and an environment that is clean, safe, accessible, and spacious enough for medical equipment and supplies. Unfortunately, securing suitable housing can be prohibitively expensive for families of CMC who experience financial hardship. According to the National Survey of Children with Special Health Care Needs (CSHCN), among parents of more complex CSHCN, 57% stated that the child’s health caused financial problems, and 54% stated that a family member stopped working because of the child’s health.1 The rising price and short supply of homes has resulted in a widespread lack of affordable housing,2 which further stresses tight family budgets. CMC are significantly more likely than other children to require health services and hospital admission. Their medical needs result in missed work days and lost wages for their parents, creating a shortfall that can make paying rent or mortgage or utility bills more difficult. Although housing instability has negative consequences for all children, families of CMC face unique challenges. Poor-quality housing can impact medical equipment and symptoms; parents report mice chewing through gastrostomy tubes or respiratory symptoms worsening due to mold from a leaky roof. Lack of electricity due to faulty wiring or nonpayment of utility bills can threaten the lives of CMC who are technology dependent. Living … Address correspondence to Rebecca R. Seltzer, MD, MHS, Department of Pediatrics, School of Medicine, Johns Hopkins University, David M. Rubenstein Child Health Building, 200 N Wolfe St, Room 2060, Baltimore, MD 21287. E-mail: rseltze2{at}jhmi.edu