We all understand the importance of routine evaluation of adults to protect us from the consequences of cardiovascular disease. What if we learned that while all states permitted routine screening of adults by heart rate, some states also included blood pressure measurements, others added a full physical examination, a few included blood lipid screens, and still fewer permitted state-of-the-art imaging techniques?

Individuals in the states that allowed heart rate measurements would question why they did not have access to the more complete battery of testing. While this scenario does not exist for cardiovascular screening in adults, it is analogous to the current practice in newborn screening for diseases that represent treatable causes of mental retardation and death.

States began newborn screening in the early 1960s for phenylketonuria (PKU), a disease that causes severe mental retardation if a special diet is not started within the first month of life. With appropriate management, individuals with PKU can expect normal developmental outcomes and function fully and effectively in society.

In the 1970s, additional diseases were added to newborn screening, including hypothyroidism, sickle cell disease, cystic fibrosis and others. All states screen for PKU and hypothyroidism, but after these two diseases, the testing varies by state from as few as three disorders, to more than 30. California adds screens for sickle cell disease and galactosemia, a rare metabolic disease. Some states use a method developed in the 1950s to screen for PKU. Other states use the sophisticated technology of tandem mass spectrometry that detects not only PKU, but more than 20 other diseases.

In the past, all efforts to develop national standards for newborn screening were unsuccessful because public health programs are state-based. A Newborn Screening Task Force co-sponsored by the U.S. Department of Health and Human Services and the American Academy of Pediatrics concluded that a national newborn screening agenda is required. This agenda will establish the diseases for which every baby should be tested and the appropriate methods for screening.

Once a national agenda is established, it remains to be determined whether there will be the political will to implement it. In 1987, a National Institutes of Health panel concluded, based on extensive clinical research, that universal newborn screening for sickle cell diseases was required to prevent overwhelming bacterial infection and death by early initiation of antibiotic prophylaxis before the first infection. Because states have not complied with this 14-year-old recommendation, nearly 100 babies with sickle cell diseases are missed each year because they are not tested. Compare that with a total of 200 babies who are identified with PKU in the United States every year.

A family can purchase supplemental screening to have their baby tested for more than 30 diseases if their state screens for fewer diseases. But if newborn screening is reorganized to benefit the public's health, why should every baby not have equal protection? Equality and justice are fundamental values within our culture. We must incorporate these values to protect all children from preventable disability and death.