Stakeholder Perspectives on Public Health Genomics Applications for Sickle Cell Disease: A Methodology for a Human Heredity and Health in Africa (H3Africa) Qualitative Research Study

OMICS A Journal of Integrative Biology

Volumn 21, Issue 6, 2017, Pages 323-332

  Treadwell, Marsha J ^a   Makani, Julie ^b   Ohene Frempong, Kwaku ^c   Ofori Acquah, Solomon ^d   McCurdy, Sheryl ^e   De Vries, Jantina ^f   Bukini, Daima ^b   Dennis Antwi, Jemima ^g   Kamga, Karen Kengne ^h   Mbekenga, Columba ^b   Wonkam, Edmond Tingang ^h   Tangwa, Godfrey ^h   Royal, Charmaine D ⁱ   Wonkam, Ambroise ^f  

^a CHILDREN S HOSPITAL OAKLAND   (United States)

^b MUHIMBILI UNIVERSITY OF HEALTH AND ALLIED SCIENCES   (Tanzania)

^c Sickle Cell Foundation of Ghana   (Ghana)

^d UNIVERSITY OF PITTSBURGH MEDICAL CENTER   (United States)

^e UNIVERSITY OF TEXAS SCHOOL OF PUBLIC HEALTH   (United States)

^f UNIVERSITY OF CAPE TOWN   (South Africa)

^g Ghana College of Nurses and Midwives   (Ghana)

^h UNIVERSITY OF YAOUNDÉ I   (Cameroon)

ⁱ DUKE UNIVERSITY   (United States)

Author keywords

Africa; epistemology and ethics; genomics; global health; qualitative research; sickle cell disease; technology assessment

Indexed keywords

ADULT; ARTICLE; CAMEROON; CONTROLLED STUDY; CROSS-SECTIONAL STUDY; EXPERIENCE; FEMALE; GENOMICS; GHANA; HEREDITY; HUMAN; KNOWLEDGE; MAJOR CLINICAL STUDY; MALE; METHODOLOGY; PERCEPTION; PHENOMENOLOGY; PRACTICE GUIDELINE; PRIORITY JOURNAL; PUBLIC HEALTH; QUALITATIVE RESEARCH; RURAL AREA; SICKLE CELL ANEMIA; SOFTWARE; TANZANIA; URBAN AREA;

EID: 85020938272     PISSN: 15362310     EISSN: 15578100     Source Type: Journal    
DOI: 10.1089/omi.2017.0047     Document Type: Article

References (41)

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. Bae HT, Baldwin CT, Sebastiani P, et al. (2012). Meta-analysis of 2040 sickle cell anemia patients: BCL11A and HBS1LMYB are the major modifiers of HbF in African Americans. Blood 120, 1961-1962.
3. Dandara C, Huzair F, Borda-Rodriguez A, et al. (2014). H3Africa and the African life sciences ecosystem: Building sustainable innovation. OMICS 18, 733-739.
4. De Vries J, Bull SJ, Doumbo O, et al. (2011). Ethical issues in human genomics research in developing countries. BMC Med Ethics 125.
5. De Vries J, Jallow M, Williams TN, Kwiatkowski D, Parker M, and Fitzpatrick R. (2012). Investigating the potential for ethnic group harm in collaborative genomics research in Africa: Is ethnic stigmatisation likely Soc Sci Med 75, 1400-1407.
6. De Vries J, Williams TN, Bojang K, Kwiatkowski DP, Fitzpatrick R, and Parker M. (2014). Knowing who to trust: Exploring the role of 'ethical metadata' in mediating risk of harm in collaborative genomics research in Africa. BMC Med Ethics 1562.
7. Dennis-Antwi JA, Culley L, Hiles DR, and Dyson SM. (2011). 'I can die today, I can die tomorrow': Lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition. Ethn Health 16, 465-481.
8. Elguero E, Delicat-Loembet LM, Rougeron V, et al. (2015). Malaria continues to select for sickle cell trait in Central Africa. Proc Natl Acad Sci U S A 112, 7051-7054.
9. Flaskerud JH, Lesser J, Dixon E, et al. (2002). Health disparities among vulnerable populations: Evolution of knowledge over five decades in Nursing Research publications. Nurs Res 51, 74-85.
10. Goodman SR, Pace BS, Hansen KC, et al. (2016). Multiomic candidate biomarkers for clinical manifestations of sickle cell severity: Early steps to precision medicine. Exp Biol Med (Maywood) 241, 772-781.
11. Green ED, and Guyer MS. (2011). Charting a course for genomic medicine from base pairs to bedside. Nature 470, 204-213.
12. Grosse SD, Odame I, Atrash HK, Amendah DD, Piel FB, and Williams TN. (2011). Sickle cell disease in Africa: A neglected cause of early childhood mortality. Am J Prev Med 41(Suppl 4), S398-S405.
13. Hsieh HF, and Shannon SE. (2005). Three approaches to qualitative content analysis. Qual Health Res 15, 1277-1288.
14. López JL, and Lunau J. (2012). ELSIfication in Canada: Legal modes of reasoning. Science Culture 21, 77-99.
15. L Allen M, Schaleben-Boateng D, Davey CS, Hang M, and Pergament S. (2015). Concept mapping as an approach to facilitate participatory intervention building. Prog Community Health Partnersh 9, 599-608.
16. Makani J, Cox SE, Soka D, et al. (2011a). Mortality in sickle cell anemia in Africa: A prospective cohort study in Tanzania. PLoS One 6, e14699.
17. Makani J, Menzel S, Nkya S, et al. (2011b). Genetics of fetal hemoglobin in Tanzanian and British patients with sickle cell anemia. Blood 117, 1390-1392.
18. Makani J, Ofori-Acquah SF, Nnodu O, Wonkam A, and Ohene-Frempong K. (2013). Sickle cell disease: New opportunities and challenges in Africa. ScientificWorldJournal 2013, 193252.
19. Marsh VM, Kamuya DM, and Molyneux SS. (2011). 'All her children are born that way': Gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya. Ethn Health 16, 343-359.
20. Matthie N, Hamilton J, Wells D, and Jenerette C. (2015). Perceptions of young adults with sickle cell disease concerning their disease experience. J Adv Nurs 72, 1441-1451.
21. Matua GA, and Wal DM. (2015). Living under the constant threat of Ebola: A phenomenological study of survivors and family caregivers during an Ebola outbreak. J Nurs Res 23, 217-224.
22. Mtatiro SN, Singh T, Rooks H, et al. (2014). Genome wide association study of fetal hemoglobin in sickle cell anemia in Tanzania. PLoS One 9, e111464.
23. Novak JD. (2003). The promise of new ideas and new technology for improving teaching and learning. Cell Biol Educ 2, 122-132.
24. Patton MQ. (2002). Qualitative Research & Evaluation Methods, 4th ed. Los Angeles, CA: Sage Publishing.
25. Piel FB, Patil AP, Howes RE, et al. (2013). Global epidemiology of sickle haemoglobin in neonates: A contemporary geostatistical model-based map and population estimates. Lancet 381, 142-151.
26. Rotimi C, Abayomi A, Abimiku A, et al. (2014). Research capacity. Enabling the genomic revolution in Africa. Science 344, 1346-1348.
27. Ruff CC, Alexander IM, Mckie C. (2005). The use of focus group methodology in health disparities research. Nurs Outlook 53, 134-140.
28. Steinberg MH, and Sebastiani P. (2012). Genetic modifiers of sickle cell disease. Am J Hematol 87, 795-803.
29. Tangwa GB. (2017). Giving voice to African thought in medical research ethics. Theor Med Bioeth 38, 101-110.
30. Tekola-Ayele F, and Rotimi CN. (2015). Translational genomics in low-and middle-income countries: Opportunities and challenges. Public Health Genomics 18, 242-247.
31. Tindana P, and De Vries J. (2016). Broad consent for genomic research and biobanking: Perspectives from low-and middleincome countries. Annu RevGenomicsHumGenet 17, 375-393.
32. Tindana P, De Vries J, Campbell M, et al. (2015). Community engagement strategies for genomic studies in Africa: A review of the literature. BMC Med Ethics 1624.
33. Treadwell MJ, Anie KA, Grant AM, Ofori-Acquah SF, and Ohene-Frempong K. (2015). Using formative research to develop a counselor training program for newborn screening in Ghana. J Genet Couns 24, 267-277.
34. Tuckett AG. (2004). Qualitative research sampling: The very real complexities. Nurs Res 12, 47-61.
35. Van Rinsum H, and Tangwa G. (2004). Colony of genes, genes of the colony: Diversity, difference and divide. Third World Q 25, 1031-1043.
36. World Health Organization. (2006). World Health Assembly, 59. Sickle-cell anaemia: Report by the Secretariat. Geneva, Switzerland.
37. Williams R. (2006). Compressed foresight and narrative bias: Pitfalls in assessing high technology futures. Science Culture 15, 327-348.
38. Wilson J, Mandich A, and Magalhaes L. (2015). Concept mapping: A dynamic, individualized and qualitative method for eliciting meaning. Qual Health Res 26, 1151-1161.
39. Wonkam A, Ngo Bitoungui VJ, and Ngogang J. (2015). Perspectives in genetics and sickle cell disease prevention in Africa: Beyond the preliminary data from Cameroon. Public Health Genomics 18, 237-241.
40. Wonkam A, Ngo Bitoungui VJ, Vorster AA, et al. (2014). Association of variants at BCL11A and HBS1L-MYB with hemoglobin F and hospitalization rates among sickle cell patients in Cameroon. PLoS One 9, e92506.
41. Wonkam A, Njamnshi AK, Mbanya D, Ngogang J, Zameyo C, and Angwafo FF. (2011). 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.