CONFLUENCE OF THE OLD AND THE NEW Bola adeyemo Institute of child health University of ibadan nigeria

The Yoruba people dominate the south-western part of Nigeria. Approximately 30 million, which was about 21% of the entire Nigerian population. Some Yoruba’s are also located in the Republics of Benin and Togo in West Africa and also in Cuba Brazil and some Caribbean countries.

The new Newborn screening (NBS) is a program to screen babies within the first few hours of life for certain serious health conditions. This identification is done before there is any observable symptoms so that treatment can commence before harm sets in. Currently there are screening tests for more than 60 disorders

NBS PROGRAM Core condition i Core condition II Secondary condition Maple syrup urine disease Homocystinuria Classic phenylketonuria Tyrosinemia, type I Primary congenital hypothyroidism Congenital adrenal hyperplasia S,S disease (sickle cell anemia) S, βeta-thalassemia S,C disease Biotinidase deficiency Critical congenital heart disease Cystic fibrosis Classic galactosemia Glycogen storage disease Type II (pompe) Hearing loss Severe combined immunodeficiencies Mucopolysaccharidosis type 1 X-linked adrenoleukodystrophy Methylmalonic acidemia with homocystinuria Malonic acidemia Isobutyrylglycinuria 2-methylbutyrylglycinuria 3-methylglutaconic aciduria 2-methyl-3-hydroxybutyric aciduria Short-chain acyl-coa dehydrogenase deficiency Argininemia Citrullinemia, type II Hypermethioninemia

The old Despite the obvious advantages of NBS it has not been fully adopted in many African countries including Nigeria. Sickle cell disease (SCD) affects more people in West Africa than in either USA or UK; universal newborn screening programs for SCD are well established in both USA and UK while in West Africa there is a glaring lack of newborn screening data for SCD1 1. Piel FB, Adamkiewicz TV, Amendah D, Williams TN, Gupta S, Grosse SD. Observed and expected frequencies of structural hemoglobin variants in newborn screening surveys in Africa and the Middle East: deviations from Hardy-Weinberg equilibrium. Genet Med. 2016;18(3):265-74.

THE OLD Why don’t we have established NBS in Nigeria? Sublime factors may have contributed directly or indirectly to the missing political support and the lack of devotion of both public and personal finances to newborn screening efforts. Many African cultures are infused with a lot of taboos and beliefs which may be contrary to mainstream biomedical science.

JUSTIFICATION Challenging ingrained myths and provision of a fresh perspective of scientific basis of disease could stimulate a new approach towards demand and acceptance of screening tests. The goal is to make the community examine alternatives to previously held beliefs; this may (or may not) lead to softening of the stance against NBS and willingness to try out the “new ideas”. The adoption of a fresh way of thinking about NBS with a possibly better informed perspective may sustain the challenge on old myths.

The confluence Explore the social and cultural constructions against screening new born for birth defects among the Yoruba ethnic group of Southwest Nigeria Explore the response to scientific principles underlying new born screening for birth defects within the context of the social and cultural constructions of the Yoruba ethnic group Determine the efficacy of short plays in stimulating communal discussion on social myths and taboos.

strategy Participant observation FGD & KII Evaluation Short plays & Audio drama Real time and Virtual town hall meetings Evaluation

CULTURAL ISSUES Belief in voodoo: refusal of body fluids Stigmatization Destiny Interplay of disease specific and non-disease specific beliefs evil spirits as causes of diseases, medical knowledge does not lead to change in health seeking behavior Lack of (or unaffordable) remedies

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