1. Catlin, Anita DNSc, FNP, FANN
  2. Volat, Deborah BSN, CNM

Article Content

Book Review

The Changing Moral Focus of Newborn Screening: An Ethical Analysis by the President's Council on Bioethics (Chaired by Edmund D. Pelligrino, MD)


Anita Catlin, DNSc, FNP, FANN


In November 2008, President Bush's appointed Council on Bioethics sent him a report on its 3-year investigation on children, bioethics, genetics, and technology. The council members, advising physicians, ethicists, and policy makers gave testimony on the effect of newborn screening on children, the family, and the nation. This comprehensive study culminated in a white paper to educate the president and policy makers in the federal and state legislatures. The white paper is now being made available to the public in the form of a 150-page published book called The Changing Moral Focus of Newborn Screening: An Ethical Analysis by the President's Council on Bioethics.1 I believe that the book would be very interesting to all nurses who care for infants and children.


In the past, newborn screening was fairly comfortably done. There was no ethical argument. We screened for 2 diseases (hypothyroidism and phenylketonuria) that were easily identifiable and easily treatable. For the last 40 years, newborn screening was performed for the sole benefit of the child being screened. Annually, about 200 American children are found to have phenylketonuria and about 1000 children are found to have congenital hypothyroidism.1 The parents are then notified, diet and medication are offered, and children identified have the ability to live healthier and longer lives.


During the past 5 to 10 years, state public health departments invested in tandem mass spectrometry. This technology can screen for more than 40 conditions referred to as "inborn errors of metabolism." These may include fatty acid disorders, amino acid disorders, and organic acid disorders, as well as lysosome storage disorders. The use of this massive screening program was recommended by the American College of Medical Genetics in a report published in 2005.2 Since the issuing of this report, every state began screening for at least 30 more conditions and some states are screening for 57 different conditions. Each state has complete freedom to choose the conditions screened for, and there is great variability on the level of parental education provided about the screening. Some states provide the screening at no cost; other states charge a fee of up to $140.00.


This new level of screening has raised ethical concerns for many. These concerns include the following:


* Some of the conditions are extremely rare and have no known treatment.


* The spectrometry test is not extremely sensitive and has many false-positive results.


* Even if a treatment is known, being identified as positive does not guarantee any access to treatment.


* The screenings may be for the purpose of scientific advancement and of no benefit to the child. In fact, alerting a family to a condition for which there is not a scientifically approved treatment has been found to cause patients and families more harm than good. In addition, families notified of a genetic possibility in 1 child may opt to have no further children.


* The screening programs are considered research and may not have any institutional review board oversight.


* The cost to the nation of newborn screening is enormous. The benefit overall is small. Other perinatal areas may be in greater need of research and public health investment, such as pregnancy-induced hypertension, asthma, home safety, and parental stress management.



This book is fascinating in its historical recounting of newborn screening, its input from famous researchers in the field, the instruction regarding genetic medicine, and the ethical debate that the topic garners. Put it on your reading list for the coming year.



1. Pellegrino ED, Bloom FE, Carson BS, et al. The changing moral focus of newborn screening: an ethical analysis by the President's Council on bioethics. Published 2008. Accessed January 15, 2010. [Context Link]


2. Watson MS, Mann MY, Lloyd-Puryear MA, Rinaldo P, Howell R. American College of Medical Genetics Newborn Screening, Expert Group. Newborn screening: toward a uniform screening panel and system-executive summary. Pediatrics. 2006;117:S296-S307. [Context Link]


Video Review

Micropremature Babies-How Low Can You Go?


by Deborah Volat, BSN, CNM


Intimate and candid, the video Micropremature Babies-How Low Can You Go?1 created, directed, and produced by NICU nurse Candy Campbell brings parents and healthcare providers inside the anguish and triumph experienced by many families of extremely premature and very low birth-weight (<1500 g) babies. The audience gains some perspective into what is personally involved in sustaining lives that would not endure without technological assistance. The film shows parents who were grateful for the technology, and others who felt their hopes for a "normal" child had been deflated. Always, it seemed, these parents were fighting for tentative outcomes and were forced to redefine their expectations.


The human instinct to protect and nurture is underscored as the film follows several families who recount fighting for survival of their little ones. We can all share, on some level, the urgency and desire to persist through the shock and fear, sacrificing, praying, and the urge to do everything to hold longer the little life these parents have promised to protect. In spite of anger, feeling doubt, guilt, and "beat down," these parents tell of their vigilance through the tremendous crisis of a premature birth. New for modern parents is the multitude of medical options and related consequences that must often be managed for the lifetime of the child. Initially, some of the featured parents are still expecting their child to be "fixed." But whether cerebral palsy, blindness, or simply delayed speech, there are inevitable hurdles that this film can aid parents of premature babies to navigate.


In the film, we hear from doctors, social workers, and nurses who work with these families. Neonatologists from renowned medical centers, such as Alta Bates in Berkeley and the University of California San Francisco, give light to the medical realities. Like parents, they are persistent but not always as optimistic. One neonatologist reminds us to recognize the spiritual nature of the relationships we have to these fragile lives. Another encourages parents to ask their physicians specific questions about the problems their babies will have, the first hint into the realities of families not interviewed or shown. A social worker discusses that technology can only bring these babies so far. It is the environment that often makes all the difference for these children, she asserts. Does every child who receives life-saving interventions receive the same care in the months and years following their birth? The video did not address this, and I was left wondering.


I was left with other questions as well. Parents should know specifically what problems their children could encounter. At what level will they function, will they talk or walk, or be able to manage in school? How did one mother interviewed finance the more than 57 hospitalizations (she counted only those longer than 1 week) and the myriad of surgeries her daughter had had by age 8 years? One neonatologist compares rates of children with IQ less than 69. Normally, the rate is 3%, but in children born 24 weeks or less, the rate is 40%. What is the true spectrum of outcomes for babies born small and at a young gestation? I would have liked these concerns addressed, so I looked a little further.


Although parents have always hovered by sick beds, historically choices were never so complex. Now, isolettes holding would-be fetuses full of monitors and tubes, surfactants, and steroids invite questions of responsibility and obligation. As healthcare providers, what can we do to help parents traverse from pregnancy to preterm birth, from new limits of viability to satisfying adulthood for these children? With low birth weight being the second leading cause of neonatal death after congenital malformations2 and an incomplete understanding of what causes premature birth in seemingly normal pregnancy, we need to offer parents solutions that match the seriousness of the problem. The National Institutes of Health states that premature birth occurs in 8% to 10% of pregnancies in the United States: "infants who survive ... are at increased risk for certain life-long health effects, such as cerebral palsy, blindness, lung diseases, learning disabilities, and developmental disabilities (sepsis and death)."3


Options are given in the literature. Good prenatal care with the usual screening can help us recognize obvious health problems and encourage appropriate diet, stress management, substance abuse treatment, and adequate dental care. Providing mothers with information, including risks, signs, and symptoms and when to call, has had an impact on women's ability to be proactive in early interventions for preterm labor. But this may not be enough. Prenatal education could have an "informed consent" component. Providing education and then trusting mothers and families to make decisions that are right and fitting for them is the providers' responsibility. Armigo4 suggests that it is necessary to provide information to mothers regarding the viability, associated morbidities, and chances of positive outcomes for the fetus at any given gestational period. In the moment of a surprise preterm birth, no one is equipped to make a fully informed decision without established knowledge to guide decisions at each stage of development.


The appropriate use of palliative care is another option missing in the film's presentation of care for these babies. If an infant is either suffering as a result of interventions or not improving with attempts to sustain life, palliation becomes a vital component of the care plan. Evaluating whether it is appropriate to continue invasive and often painful procedures is necessary when options may not change outcomes but rather prolong life with pain or increase morbidities. This crossroads was not addressed, but it leads to the ultimate responsibility and dilemma-discretion in use of technology. The film shows that we are able to make tremendous changes in many lives with the use of machines, but there is neither a formula nor an ideal outcome. The National Association of Neonatal Nurses statement regarding making ethical treatment decisions for these babies urges that individual cases have goals that are reevaluated whenever a change in condition affects potential outcomes.5 These goals should be dynamic and should hold the family and neonate at the center of the decision but should be made with the input of all parties involved. A film preparing parents might acknowledge the ambiguity of these decisions.


Overall, this video is an excellent source for parents to find hope in shared experiences. By watching this film, parents new to dealing with prematurity could encounter a little less fear in the whirlwind of decisions and procedures. Hearing that at least one family struggled to bond through the tangle of wires and tubes, or another mother suffered by not being able to hold the child separated from her womb too soon, or a couple felt confusion arriving home with no child in arms, new parents could anticipate and perhaps better weather the journey of assisting their premature infants to their best possible future. And though the most difficult and painful outcomes were not featured here, there was reference to the range of possible long-term outcomes. Combined with realistic information, the right conditions, appropriate technology, and the tremendous love and fortitude of parents and providers, many of these micropremature babies can develop into the healthy children in this film. This film is a good beginning, but not a comprehensive dialogue, on the topic.


For purchase, visit or go to Purchase price is $19.95 ($2.00 of which goes to the March of Dimes).



1. Campbell C. Micropremature Babies, How Low Can You Go. Peripatetic Productions; 2009. [Context Link]


2. Heron M, Hoyert D, Murphy SL, Xu J, Kochanek KD, Tejada-Vera B. National VitalStatistics Report. 2009;57(14). Accessed October 19, 2009. [Context Link]


3. Shriver E. Research on preterm labor and premature birth. Accessed October 19, 2009. [Context Link]


4. Armigo C. Prenatal education regarding gestational development, viability and survivorship. Adv Neonatal Care. 2008;8(3):185-189. [Context Link]


5. National Association of Neonatal Nurses. Position Statement #3015 NICU nurse involvement in ethical decisions (treatment of critically ill newborns), 2006. Accessed October 19, 2009. [Context Link]