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Ukrainian-American Birth Defects Program
Abstracts of the Reports of the UABDP Participants
of the 2-nd National Bioethics Congress
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The current situation with birth defects prevalence in Donetsk region testifies that there are a number of problems to which, unfortunately, insufficient attention is paid. Among the problems the bioethical aspects of forming public opinion in general and government attitude in particular towards disabled children with birth defects have significant importance. Limited financial and technical support of the antenatal screening and fetus birth defects prevention, inadequate educational work with women of fertile age and young couples, unavailability of the appropriate birth defects information for parents of affected children do not facilitate the birth defects prevalence decrease. Fears of the difficulties associated with care and education of birth defects children, low social and economical level of life are the reasons of abandoning children and shifting all the responsibilities for affected children to medical institutions.
The today's "tutorial" pattern of children's homes work implies conducting activities of care, treatment and social adaptation of such children. Very often incomplete information about family and maternal anamnesis, absence of data about antenatal and postnatal development of children before their admission to the children's home complicate the process of treatment, rehabilitation and impede their social adaptation. Unfortunately, this is not a complete set of problems for medical and educational personnel who want to be at most useful for children affected with severe physical defects. Our vision of ways of overcoming the problems includes creation of information centers, centers of social support to parents of birth defects affected children, involvement of public initiative groups etc.
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22/November/2004 sl
