Disparities or Inequities in Newborn Screening (NBS) Programs
- Posted
- Server
- Preprints.org
- DOI
- 10.20944/preprints202511.1966.v1
The subject of the title is discussed from personal experience in Galicia (Spain), with a brief allusion to the beginning of NBS, indicating that without diagnosis, there can be no treatment, in luding the outstanding role played by LI Woolf, who always advocated not limiting it to PKU, and ignorance of their work, even in the hospital itself, with a footnote referring to current situations. The beginnings of NBS programs in Spain are referred to, which were born expanded, with a methodology that I cal open, chromatographic techniques, and nonspecific reagents that originate open procedures, applicable, for example, in the detection of lysosomal storage diseases, demonstrating the importance of urine in our program. The methodology used determines the pathologies to be detected, and the professionals who choose one or the other according to the criteria that are maintained today are largely responsible for the current disparities. The administrations acted on the matter sometime later when it had been rolling and running in different ways, depeending on the territory. Like others, Galicia always had an expanded program and was almost always ahead. At one point, a “Dr. BESSMAN” appeared in our administration who discovered the systematic reviews and scientific evidence, ignoring our evidence; after maneuvering in different spaces, he ried to be coercive, reducing the program without knowing the i tended purpose; a petition on the Change.org platform stopped that claim. The approach is based on a universal public social and healthcare system with competent professionals to successfully address rare diseases and, in the event of unexpected findings, to seek the best option for the patient. What has been published on the subject and the peculiarities of Spain are discussed. It is suggested that epidemiologists who are dedicated to this matter mutate into rareologists, and the situation at the beginning of the NBS is recalled when organized opposition from doctors arose, highlighting Samuel P. Bessman. It was the parents, as happened with FØling and Bickel, who got them interested in looking for the cause and treatment; now, they (parents and relatives) are changing to continue expanding the NBS programs. In Galicia, it appears that the criteria set by political leaders have changed, which has resulted in the exclusion of potential candidates such as Bessman from this role. In Spain, there are still disparities, as in Europe and many other places; the approach will have to be different depending on the social-health system of origin. Prof. F. Mayor Zaragoza took steps to address the issue within the framework of the Universal Declaration of Human Rights. If the precursors of the NBS had waited for scientific evidence at its inception in 1956 and 1957, it would not exist today. It is not possible to look for differences in the health of populations with broad and narrow NBS programs because these diseases are rare and do not significantly influence global health. Seeking equity cannot curtail programmers where no harm caused by them is appreciated. The differences between programs allow them to be compared and to progress. The appearance of biomarkers, treatments, analytic l technology, etc., requires frequent changes in the programs, and the training, criteria, and mentality of those responsible for them will depend on whether these changes are adopted.