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

OMICS A Journal of Integrative Biology

Volumn 18, Issue 7, 2014, Pages 472-480

  Wonkam, Ambroise ^a   Hurst, Samia ^b  

^a UNIVERSITY OF CAPE TOWN   (South Africa)

^b UNIVERSITY OF GENEVA   (Switzerland)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; CAMEROON; COMPARATIVE STUDY; CONFLICT; EARLY DIAGNOSIS; FEMALE; FETUS MALFORMATION; GENETIC COUNSELING; GENETIC SCREENING; GYNECOLOGIST; HEALTH CARE POLICY; HEALTH SURVEY; HUMAN; MAJOR CLINICAL STUDY; MALE; MATERNAL WELFARE; MEDICAL ABORTION; NEWBORN SCREENING; OBSTETRICIAN; PARENTAL ATTITUDE; PATIENT ATTITUDE; PATIENT CARE; PERSONAL EXPERIENCE; PHYSICIAN ATTITUDE; PRACTICE GUIDELINE; PREDICTIVE VALUE; PREGNANCY; PREGNANCY TERMINATION; PRENATAL CARE; PRENATAL DIAGNOSIS; PRIORITY JOURNAL; QUANTITATIVE ANALYSIS; RESIDENT; SICKLE CELL ANEMIA; SOCIOECONOMICS; ANEMIA, SICKLE CELL; ATTITUDE TO HEALTH; HEALTH CARE SURVEY; HEALTH PERSONNEL ATTITUDE; POLICY; PREGNANCY COMPLICATIONS, HEMATOLOGIC; QUESTIONNAIRE; RISK FACTOR; YOUNG ADULT;

ADULT; ANEMIA, SICKLE CELL; ATTITUDE OF HEALTH PERSONNEL; CAMEROON; FEMALE; GENETIC TESTING; HEALTH CARE SURVEYS; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; MALE; POLICY; PREGNANCY; PREGNANCY COMPLICATIONS, HEMATOLOGIC; PRENATAL DIAGNOSIS; QUESTIONNAIRES; RISK FACTORS; YOUNG ADULT;

EID: 84903964248     PISSN: 15362310     EISSN: 15578100     Source Type: Journal    
DOI: 10.1089/omi.2013.0167     Document Type: Article

References (37)

1. Adeola Animasahun B, Nwodo U, and Njokanma OF. (2012). Prenatal screening for sickle cell anemia: Awareness among health professionals and medical students at the Lagos University Teaching Hospital and the concept of prevention by termination. J Pediatr Hematol Oncol 34, 252-256.
2. Atz AM, and Wessel DL. (1997). Inhaled nitric oxide in sickle cell disease with acute chest syndrome. Anesthesiology 4, 988-990.
3. Ballas SK, Kesen MR, Goldberg MF, et al. (2012). Beyond the definitions of the phenotypic complications of Sickle Cell Disease: An update on management. SciWorld J 2012, 949535.
4. Bartolucci P, and Galactéros F. (2012). Clinical management of adult sickle-cell disease. Curr Opin Hematol 19, 149-155.
5. Belisário AR, Rodrigues CV, Martins ML, Silva CM, and Viana MB. (2010). Coinheritance of a-thalassemia decreases the risk of cerebrovascular disease in a cohort of children with sickle cell anemia. Hemoglobin 34, 516-529.
6. Boland R, and Katzive L. (2008). Developments in laws on induced abortion: 1998-2007. Int Fam Plan Perspect 34, 110-120.
7. Brown BJ, Okereke JO, Lagunju IA, Orimadegun AE, Ohaeri JU, and Akinyinka OO. (2010). Burden of health-care of carers of children with sickle cell disease in Nigeria. Health Soc Care Community 18, 289-295.
8. Durosinmi MA, Odebiyi AI, Adediran IA, Akinola NO, Adegorioye DE, and Okunade MA. (1995). Acceptability of prenatal diagnosis of sickle cell anaemia (SCA) by female patients and parents of SCA patients in Nigeria. Soc Sci Med 41, 433-436.
9. Garel M, Gosme-Seguret S, Kaminski M, and Cuttini M. (2002). Ethical decision-making in prenatal diagnosis and termination of pregnancy: A qualitative survey among physicians and midwives. Prenat Diagn 22, 811-817.
10. Giardiello FM, Brensinger JD, Petersen GM, et al. (1997). The use and interpretation of commercial APC gene testing for familial adenomatous polyposis. N Engl J Med 336, 823-827.
11. Klings ES, and Morris CR. (2012). Making it personal: Using genomics to predict pulmonary hypertension in sickle cell disease. Am J Respir Crit Care Med 186, 304-305.
12. Kyerewaa Edwin A, Edwin F, and Etwire V. (2011). Controlling sickle cell disease in GhanaEthics and options. Pan Afr Med J 10,14.
13. Lettre G, Sankaran VG, Bezerra MA, et al. (2008). DNA polymorphisms at the BCL11A, HBS1L-MYB, and betaglobin loci associate with fetal hemoglobin levels and pain crises in sickle cell disease. Proc Natl Acad Sci USA 105, 11869-11874.
14. Locatelli F, Kabbara N, Ruggeri A., et al. (2013). Outcome of patients with hemoglobinopathies given either cord blood or bone marrow transplantation from an HLA-identical sibling. Blood 122, 1072-1078.
15. Makani J, Cox SE, Soka D, et al. (2011). Mortality in sickle cell anemia in Africa: A prospective cohort study in Tanzania. PLoS One 6, e14699.
16. Mountcastle-Shah E, and Holtzman NA. (2000). Primary care physicians' perceptions of barriers to genetic testing and their willingness to participate in research. Am J Med Genet 94, 409-416.
17. Norman BJ, and Miller SD. (2011). Human genome project and sickle cell disease. Soc Work Public Health 26, 405-416.
18. Platt OS, Brambilla DJ, Rosse WF, et al. (1994). Mortality in sickle cell disease. Life expectancy and risk factors for early death. N Engl J Med 330, 1639-1644.
19. Rahimy MC, Gangbo A, Ahouignan G, and Alihonou E. (2009). Newborn screening for sickle cell disease in the Republic of Benin. J Clin Pathol 62, 46-48.
20. Scott CJ, Futter M, and Wonkam A. (2013). Prenatal diagnosis and termination of pregnancy: Perspectives of South African parents of children with Down syndrome. J Community Genet 4, 87-97.
21. Shakespeare T. (1998). Choices and rights: Eugenics, genetics and disability equality. Disability Society 13, 665-681.
22. Sheth S, Licursi M, and Bhatia M. (2013). Sickle cell disease: Time for a closer look at treatment options? Br J Haematol 162, 455-464.
23. Steinberg MH, and Sebastiani P. (2012). Genetic modifiers of sickle cell disease. Am J Hematol 87, 795-803
24. Thein SL, Menzel S, Lathrop M, and Garner C. (2009). Control of fetal hemoglobin: New insights emerging from genomics and clinical implications. Hum Mol Genet 18(R2), R216-223.
25. Ware RE, and Helms RW. (2010). Stroke with transfusion changing to hydroxyurea (SWiTCH): A phase 3 randomized clinical trial for treatment of children with sickle cell anemia, previous stroke, and iron overload. Blood 116, 367.
26. Weatherall DJ. (2008). Hemoglobinopathies worldwide: Present and future. Curr Mol Med 8, 592-599.
27. Weatherall DJ, and Clegg JB. (2001). Inherited haemoglobin disorders: An increasing global health problem. Bull World Health Organ 79, 704-712.
28. Wertz DC, and Knoppers BM. (2002). Serious genetic disorders: Can or should they be defined? Am J Med Genet 108, 29-35.
29. Wonkam A, de Vries J, Royal CD, Ramesar R, and Angwafo FF 3rd. (2013). Would you terminate a pregnancy affected by sickle cell disease? Analysis of views of patients in Cameroon. J Med Ethics. doi: 10. 1136/medethics-2013-101392
30. Wonkam A, and Hurst SA. (2007). Acceptance of abortion by doctors and medical students in Cameroon. Lancet 369, 1999.
31. Wonkam A, Mba CZ, Mbanya D, Ngogang J, Ramesar R, and Angwafo FF 3rd. (2014a). Psychosocial burden of sickle cell disease on parents with an affected child in Cameroon. J Genet Couns 23, 192-201.
32. Wonkam A, Mba CZ, Mbanya D, Ngogang J, Ramesar R, and Angwafo FF 3rd. (2014b). Psychosocial stressors of sickle cell disease on adult patients in Cameroon. J Genet Couns DOI: 10. 1007/s10897-014-9701-z.
33. Wonkam A, Ngongang Tekendo C, Zambo H, and Morris MA. (2011c). Initiation of prenatal genetic diagnosis of sickle cell anaemia in Cameroon (sub-Saharan Africa). Prenat Diagn 31, 1210-1212.
34. Wonkam A, Njamnshi AK, and Angwafo FF III. (2006). Knowledge and attitudes concerning medical genetics amongst physicians and medical students in Cameroon (sub-Saharan Africa). Genet Med 8, 331-338.
35. Wonkam A, Njamnshi AK, Mbanya D, Ngogang J, Zameyo C, and Angwafo FF 3rd. (2011a). Acceptability of prenatal diagnosis by a sample of parents of sickle cell anemia patients in Cameroon (sub-Saharan Africa). J Genet Couns 20, 476-485.
36. Wonkam A, Tekendo CN, Sama DJ, et al. (2011b). Initiation of a medical genetics service in sub-Saharan Africa: Experience of prenatal diagnosis in Cameroon. Eur J Med Genet 54, e399-404
37. World Bank. (2010). Education for all-fast track initiative: Support to the education sector. Report no. 48373, 1-2.