Abstract
For more than 50 years, most industrialized countries have mandated population screening of newborns for medical conditions that meet a few straightforward criteria (Wilson and Jungner 1968). The condition must be an important health problem. The screening test should be accurate. There must be an effective treatment that is readily available to the people who have been screened. The cost of the program, including screening, diagnosis, and treatment, must be reasonable. When all these conditions are met, then the medical, legal, and ethical consensus has been that it is justifiable to mandate newborn screening. Screening tests that meet these criteria have been endorsed by the Institute of Medicine, the American Society of Human Genetics and the American College of Medical Genetics, an NIH Task Force on Genetic Testing, the American Academy of Pediatrics, and the President’s Council on Bioethics (Committee on Assessing Genetic Risks 1994; Botkin et al. 2015; Holtzman 1997; American Academy of Pedriatrics Newborn Screening Task Force 2000; President’s Council on Bioethics 2008). For all of these organizations, the ethical justification for screening is that it provides direct benefit to the newborn and that avoiding or delaying screening could cause harm to that newborn. […]