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September 30, 2004

Birth Defects, Orphans and Ethics

Wolodymyr Wertelecki
Department of Medical Genetics
University of South Alabama (Mobile, USA)

Director of the Ukrainian-American
Birth Defects Program

Wolodymyr Wertelecki, M.D.

The scientific understanding of Birth Defects (BD) has significantly increased through advances in medical genetics and teratology. Both disciplines require a grasp of epidemiology, environmental sciences, preventive medicine and an understanding of ethical dimensions.

We seek to paint a panorama about BD based on our experiences in Ukraine and to share our conclusions and intuitions with Ukrainian leaders who promote the health and development of future generations.

Ideas about ethics are as old as civilization itself. The idea "Ethics" relates to "Eti" and "Ethos" or "Truth". The idea "Moral" and "Morae" stand for "Habit" and "Fates". "Ego" stands for "Self" and points to "Aidos" or "Eidos" as the inborn capacity to feel repugnance and awareness of what "should be avoided", which some call "Sin". "Morae", "Nefas", or in Ukrainian, "Mara", warn our conscience about what is nefarious or immoral. From "Oedipus Rex", by Sophocles we learn that "Zarozymilist" ("beyond reason"), or Hubris (pride) is the mother of tyrannies including those of some "health regimes". Aristotle spoke of "Hamartia" or flaws (spiritual or structural) that are inherent in mortals, a prelude to the scientific understanding of "Hamartomas" (malformed tissues), the essence of BD.

Birth defects, broadly defined, refer to developmental disorders, functional or structural in nature, that manifest at any age, whose cause is either genetic or environmental. The only restriction of this popular, non scientific term, is that the cause was present at birth. In Ukraine, as in all other developed societies, BD are the leading cause of infant mortality and disabilities, the most burdensome being mental subnormality. Such disorders are complex, chronic, often entirely preventable, and require complex multidisciplinary health and social care programs. In the U.S. the term "children with special healthcare needs" is relevant to most of those with a BD. Embryos, fetuses and children are more sensitive to detrimental environmental factors such as radiation (Chornobyl), medications (thalidomide), infections (Rubella), teratogens (alcohol), and micronutrient deficiencies (iodine or folic acid). In fact, in Ukraine there is an epidemic of Spina Bifida (Neural Tube Defects or NTD) as well as an epidemic centered in orphanages where the physical and mental development of many biologically sound children is diminished. Our experience indicates that these and other developmental disorders can be substantially prevented in Ukraine without major expenditures through a shift in perceptions of "Ethos", "Hubris" and "Morae".

Modern Developmental Pediatrics, formerly referred to as puericulture, underscores that children require nutrition of the body and the mind. The number of children in Ukrainian orphanages is growing and their nurturing is far from ideal. In fact, many homeless children with full biologic potential exhibit signs of physical malnutrition and psychosocial dwarfism.

We are confident that in Ukraine such "Hamartia" can be ameliorated and often totally prevented by modest but difficult to introduce interventions. Health "regimes", impregnated by traditions, often survive through "hubris" but are increasingly being challenged by a growing sense of "Aidos". It appears that Ukraine is ready to declare children with "special healthcare needs" to be a privileged social class. In the final analysis, the care of the less fortunate, particularly those whose misfortune is congenital, is an index of a highly civilized society.

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17/November/2004 sl