Literature DB >> 24754796

A call for policy action in sub-Saharan Africa to rethink diagnostics for pregnancy affected by sickle cell disease: differential views of medical doctors, parents and adult patients predict value conflicts in Cameroon.

Ambroise Wonkam1, Samia Hurst.   

Abstract

Sickle cell disease (SCD) is a debilitating illness that affects the life expectancy of patients. It is possible to test for SCD before birth, to allow for reproductive options to parents. However, under Cameroonian Law, voluntary abortion is a criminal offense and medical abortion is permitted only "…if it is done by an authorized professional and justified by the need to save the mother from grave health jeopardy." The objective of the present study was to compare the views of Cameroonian doctors, parents with at least one living SCD-affected child, and adult SCD patients, regarding prenatal genetic diagnosis and termination of SCD-affected pregnancy. We conducted a quantitative sociological survey of 110 doctors, 130 parents, and 89 adult patients. The majority accepted the prenatal genetic diagnosis for SCD (78.7%, 89.8%, and 89.2%, respectively). Parents (62.5%) were more in favor of termination of SCD-affected pregnancy, than doctors and adults patients (36.1% and 40.9% acceptance, respectively). Parents and patients who found medical abortion acceptable cited fear to have a SCD-affected child (98.1 and 88.9%) and the poor quality of the affected child's health (92.6% and 81.5%). The data underscore the urgency of policy action to place emphasis on: premarital screening, early detection and care of SCD, socio-economic measures to assist SCD-affected families, appropriateness to consider maternal distress due to fetal anomalies in medical abortion legislation. These novel findings signal potential value-based conflicts on the horizon, and can usefully inform the future policy actions in the African continent as OMICS biotechnologies are increasingly employed in global health. To the best of our knowledge, the present study is the first attempt in sub-Saharan Africa to attempt to triangulate the views of multiple stakeholders towards prenatal diagnosis of SCD and termination of an affected pregnancy.

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Year:  2014        PMID: 24754796      PMCID: PMC4086195          DOI: 10.1089/omi.2013.0167

Source DB:  PubMed          Journal:  OMICS        ISSN: 1536-2310


  36 in total

1.  Acceptance of abortion by doctors and medical students in Cameroon.

Authors:  Ambroise Wonkam; Samia A Hurst
Journal:  Lancet       Date:  2007-06-16       Impact factor: 79.321

2.  Newborn screening for sickle cell disease in the Republic of Benin.

Authors:  M C Rahimy; A Gangbo; G Ahouignan; E Alihonou
Journal:  J Clin Pathol       Date:  2009-01       Impact factor: 3.411

3.  Human genome project and sickle cell disease.

Authors:  Brenda J Norman; Sheila D Miller
Journal:  Soc Work Public Health       Date:  2011

4.  Acceptability of prenatal diagnosis by a sample of parents of sickle cell anemia patients in Cameroon (sub-Saharan Africa).

Authors:  Ambroise Wonkam; Alfred K Njamnshi; Dora Mbanya; Jeanne Ngogang; Caryl Zameyo; Fru F Angwafo
Journal:  J Genet Couns       Date:  2011-05-21       Impact factor: 2.537

5.  Inherited haemoglobin disorders: an increasing global health problem.

Authors:  D J Weatherall; J B Clegg
Journal:  Bull World Health Organ       Date:  2001-10-24       Impact factor: 9.408

6.  Prenatal diagnosis and termination of pregnancy: perspectives of South African parents of children with Down syndrome.

Authors:  Chantelle Jennifer Scott; Merle Futter; Ambroise Wonkam
Journal:  J Community Genet       Date:  2012-10-25

7.  Mortality in sickle cell disease. Life expectancy and risk factors for early death.

Authors:  O S Platt; D J Brambilla; W F Rosse; P F Milner; O Castro; M H Steinberg; P P Klug
Journal:  N Engl J Med       Date:  1994-06-09       Impact factor: 91.245

Review 8.  Beyond the definitions of the phenotypic complications of sickle cell disease: an update on management.

Authors:  Samir K Ballas; Muge R Kesen; Morton F Goldberg; Gerard A Lutty; Carlton Dampier; Ifeyinwa Osunkwo; Winfred C Wang; Carolyn Hoppe; Ward Hagar; Deepika S Darbari; Punam Malik
Journal:  ScientificWorldJournal       Date:  2012-08-01

9.  Outcome of patients with hemoglobinopathies given either cord blood or bone marrow transplantation from an HLA-identical sibling.

Authors:  Franco Locatelli; Nabil Kabbara; Annalisa Ruggeri; Ardeshir Ghavamzadeh; Irene Roberts; Chi Kong Li; Françoise Bernaudin; Christiane Vermylen; Jean-Hugues Dalle; Jerry Stein; Robert Wynn; Catherine Cordonnier; Fernando Pinto; Emanuele Angelucci; Gérard Socié; Eliane Gluckman; Mark C Walters; Vanderson Rocha
Journal:  Blood       Date:  2013-05-21       Impact factor: 22.113

10.  Knowledge and attitudes concerning medical genetics amongst physicians and medical students in Cameroon (sub-Saharan Africa).

Authors:  Ambroise Wonkam; Alfred K Njamnshi; Fru F Angwafo
Journal:  Genet Med       Date:  2006-06       Impact factor: 8.822

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  6 in total

1.  Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years.

Authors:  Agatha M Gallo; Diana J Wilkie; Yingwei Yao; Robert E Molokie; Christiane Stahl; Patricia E Hershberger; Zhongsheng Zhao; Marie L Suarez; Bonnye Johnson; Rigoberto Angulo; Jesus Carrasco; Veronica Angulo; Alexis A Thompson
Journal:  J Genet Couns       Date:  2015-08-28       Impact factor: 2.537

2.  Perspectives in Genetics and Sickle Cell Disease Prevention in Africa: Beyond the Preliminary Data from Cameroon.

Authors:  Ambroise Wonkam; Valentina Josiane Ngo Bitoungui; Jeanne Ngogang
Journal:  Public Health Genomics       Date:  2015-06-04       Impact factor: 2.132

3.  Evaluation of Nine Consensus Indices in Delphi Foresight Research and Their Dependency on Delphi Survey Characteristics: A Simulation Study and Debate on Delphi Design and Interpretation.

Authors:  Stanislav Birko; Edward S Dove; Vural Özdemir
Journal:  PLoS One       Date:  2015-08-13       Impact factor: 3.240

4.  Success stories in genomic medicine from resource-limited countries.

Authors:  Konstantinos Mitropoulos; Hayat Al Jaibeji; Diego A Forero; Paul Laissue; Ambroise Wonkam; Catalina Lopez-Correa; Zahurin Mohamed; Wasun Chantratita; Ming Ta Michael Lee; Adrian Llerena; Angela Brand; Bassam R Ali; George P Patrinos
Journal:  Hum Genomics       Date:  2015-06-18       Impact factor: 4.639

5.  Distribution of haemoglobin genotypes, knowledge, attitude and practices towards sickle cell disease among unmarried youths in the Buea Health District, Cameroon.

Authors:  Nini Yesih Ngwengi; Peter Nde Fon; Dora Mbanya
Journal:  Pan Afr Med J       Date:  2020-10-01

6.  Perceptions and Practice of Early Diagnosis of Sickle Cell Disease by Parents and Physicians in a Southwestern State of Nigeria.

Authors:  Oladele Simeon Olatunya; Adefunke Olarinre Babatola; Ezra Olatunde Ogundare; Babatunde Ajayi Olofinbiyi; Olubunmi Adeola Lawal; Jacob Olumuyiwa Awoleke; Olusola Peter Aduloju; Alaba Olanrewaju Daramola; Eyitayo Ebenezer Emmanuel; Oyebanji Anthony Olajuyin; Akinwumi Kolawole Komolafe; Abiola Olukayode Olaleye
Journal:  ScientificWorldJournal       Date:  2020-05-31
  6 in total

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