Recruitment of Yoruba families from Nigeria for genetic research: experience from a multisite keloid study

BMC Medical Ethics

Ernst J Reichenberger²  Odunayo M Oluwatosin¹  Solomon O Fadiora³  Samuel Ademola¹  Victoria Odesina⁴  Peter B Olaitan³ 

[1] Department of Surgery, Division of Plastic Surgery, University of Ibadan, Ibadan, Nigeria;Department of Reconstructive Sciences, Center for Regenerative Medicine and Developmental Biology, University of Connecticut Health Center, 263 Farmington Avenue, Farmington, CT 06030-3705, USA;Department of Surgery, Ladoke Akintola University of Technology, College of Health Sciences, Osogbo, Nigeria;Department of Medicine, University of Connecticut Health Center, Farmington, CT 06030, USA

关键词: Low resource settings;    Nigeria;    Yoruba;    Families;    Genetics;    Recruitment;    Keloid;   

Others  :  1090082
DOI  :  10.1186/1472-6939-15-65

 received in 2014-04-05, accepted in 2014-08-22,  发布年份 2014

【 摘 要 】

Background

More involvement of sub-Saharan African countries in biomedical studies, specifically in genetic research, is needed to advance individualized medicine that will benefit non-European populations. Missing infrastructure, cultural and religious beliefs as well as lack of understanding of research benefits can pose a challenge to recruitment. Here we describe recruitment efforts for a large genetic study requiring three-generation pedigrees within the Yoruba homelands of Nigeria. The aim of the study was to identify genes responsible for keloids, a wound healing disorder. We also discuss ethical and logistical considerations that we encountered in preparation for this research endeavor.

Methods

Protocols for this bi-national intercultural study were approved by the Institutional Review Board (IRB) in the US and the ethics committees of the Nigerian institutions for consideration of cultural differences. Principles of community based participatory research were employed throughout the recruitment process. Keloid patients (patient advisors), community leaders, kings/chiefs and medical directors were engaged to assist the research teams with recruitment strategies. Community meetings, church forums, and media outlets (study flyers, radio and TV announcements) were utilized to promote the study in Nigeria. Recruitment of research participants was conducted by trained staff from the local communities. Pedigree structures were re-analyzed on a regular basis as new family members were recruited and recruitment challenges were documented.

Results

Total recruitment surpassed 4200 study participants over a 7-year period including 79 families with complete three-generation pedigrees. In 9 families more than 20 family members participated, however, in 5 of these families, we encountered issues with pedigree structure as members from different branches presented inconsistent family histories. These issues were due to the traditional open family structure amongst the Yoruba and by beliefs in voodoo or in juju. In addition, family members living in other parts of the country or abroad complicated timely and complete family recruitment.

Conclusions

Organizational, logistics and ethics challenges can be overcome by additional administrative efforts, good communication, community involvement and education of staff members. However, recruitment challenges due to infrastructural shortcomings or cultural and religious beliefs can lead to significant delays, which may negatively affect study time lines and expectations of funding agencies.

【 授权许可】

   
2014 Olaitan et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

【 参考文献 】

• [1]Ramsay M, Tiemessen CT, Choudhury A, Soodyall H: Africa: the next frontier for human disease gene discovery? Hum Mol Genet 2011, 20(R2):R214-R220.
• [2]Burroughs VJ, Maxey RW, Levy RA: Racial and ethnic differences in response to medicines: towards individualized pharmaceutical treatment. J Natl Med Assoc 2002, 94(10 Suppl):1-26.
• [3]Kodama K, Tojjar D, Yamada S, Toda K, Patel CJ, Butte AJ: Ethnic differences in the relationship between insulin sensitivity and insulin response: a systematic review and meta-analysis. Diabetes Care 2013, 36(6):1789-1796.
• [4]Ngaimisi E, Habtewold A, Minzi O, Makonnen E, Mugusi S, Amogne W, Yimer G, Riedel KD, Janabi M, Aderaye G, Mugusi F, Bertilsson L, Aklillu E, Burhenne J: Importance of ethnicity, CYP2B6 and ABCB1 genotype for efavirenz pharmacokinetics and treatment outcomes: a parallel-group prospective cohort study in two sub-Saharan Africa populations. PLoS One 2013, 8(7):e67946.
• [5]Viatte S, Flynn E, Lunt M, Barnes J, Singwe-Ngandeu M, Bas S, Barton A, Gabay C: Investigation of Caucasian rheumatoid arthritis susceptibility loci in African patients with the same disease. Arthritis Res Ther 2012, 14(6):R239.
• [6]Tayo BO, Kramer H, Salako BL, Gottesman O, McKenzie CA, Ogunniyi A, Bottinger EP, Cooper RS: Genetic variation in APOL1 and MYH9 genes is associated with chronic kidney disease among Nigerians. Int Urol Nephrol 2013, 45(2):485-494.
• [7]Kariuki SN, Franek BS, Mikolaitis RA, Utset TO, Jolly M, Skol AD, Niewold TB: Promoter variant of PIK3C3 is associated with autoimmunity against Ro and Sm epitopes in African-American lupus patients. J Biomed Biotechnol 2010, 2010:826434.
• [8]Lander ES, Linton LM, Birren B, Nusbaum C, Zody MC, Baldwin J, Devon K, Dewar K, Doyle M, FitzHugh W, Funke R, Gage D, Harris K, Heaford A, Howland J, Kann L, Lehoczky J, LeVine R, McEwan P, McKernan K, Meldrim J, Mesirov JP, Miranda C, Morris W, Naylor J, Raymond C, Rosetti M, Santos R, Sheridan A, Sougnez C, et al.: Initial sequencing and analysis of the human genome. Nature 2001, 409(6822):860-921.
• [9]Abecasis GR, Auton A, Brooks LD, DePristo MA, Durbin RM, Handsaker RE, Kang HM, Marth GT, McVean GA, Genomes Project C: An integrated map of genetic variation from 1,092 human genomes. Nature 2012, 491(7422):56-65.
• [10]International HapMap C, Frazer KA, Ballinger DG, Cox DR, Hinds DA, Stuve LL, Gibbs RA, Belmont JW, Boudreau A, Hardenbol P, Leal SM, Pasternak S, Wheeler DA, Willis TD, Yu F, Yang H, Zeng C, Gao Y, Hu H, Hu W, Li C, Lin W, Liu S, Pan H, Tang X, Wang J, Wang W, Yu J, Zhang B, Zhang Q, et al.: A second generation human haplotype map of over 3.1 million SNPs. Nature 2007, 449(7164):851-861.
• [11]Sachidanandam R, Weissman D, Schmidt SC, Kakol JM, Stein LD, Marth G, Sherry S, Mullikin JC, Mortimore BJ, Willey DL, Hunt SE, Cole CG, Coggill PC, Rice CM, Ning Z, Rogers J, Bentley DR, Kwok PY, Mardis ER, Yeh RT, Schultz B, Cook L, Davenport R, Dante M, Fulton L, Hillier L, Waterston RH, McPherson JD, Gilman B, Schaffner S, et al.: A map of human genome sequence variation containing 1.42 million single nucleotide polymorphisms. Nature 2001, 409(6822):928-933.
• [12]Rotimi CN, Jorde LB: Ancestry and disease in the age of genomic medicine. N Engl J Med 2010, 363(16):1551-1558.
• [13]Shriner D, Adeyemo A, Ramos E, Chen G, Rotimi CN: Mapping of disease-associated variants in admixed populations. Genome Biol 2011, 12(5):223.
• [14]Datubo-Brown DD, Blight A: Inhibition of human fibroblast growth in vitro by a snake oil. Br J Plast Surg 1990, 43(2):183-186.
• [15]Taylor SC, Kelly AP, Dupree NE, Kimball AB, Lawrence RC: Health disparities in arthritis and musculoskeletal and skin diseases-the dermatology session: National Institute of Arthritis and Musculoskeletal and Skin Diseases, Bethesda, Maryland, December 15-16, 2000. J Am Acad Dermatol 2002, 47(5):770-773.
• [16]Durani P, Bayat A: Levels of evidence for the treatment of keloid disease. J Plast Reconstr Aesthet Surg 2008, 61(1):4-17.
• [17]Leventhal D, Furr M, Reiter D: Treatment of keloids and hypertrophic scars: a meta-analysis and review of the literature. Arch Facial Plast Surg 2006, 8(6):362-368.
• [18]Marneros AG, Norris JE, Olsen BR, Reichenberger E: Clinical genetics of familial keloids. Arch Dermatol 2001, 137(11):1429-1434.
• [19]Shih B, Bayat A: Genetics of keloid scarring. Arch Dermatol Res 2010, 302(5):319-339.
• [20]Russell SB, Russell JD, Trupin KM, Gayden AE, Opalenik SR, Nanney LB, Broquist AH, Raju L, Williams SM: Epigenetically altered wound healing in keloid fibroblasts. J Invest Dermatol 2010, 130(10):2489-2496.
• [21]Clark JA, Turner ML, Howard L, Stanescu H, Kleta R, Kopp JB: Description of familial keloids in five pedigrees: evidence for autosomal dominant inheritance and phenotypic heterogeneity. BMC Dermatol 2009, 9:8.
• [22]Bloom D: Heredity of keloids. New York State J Med 1956, 56(4):511-519.
• [23]Omo-Dare P: Genetic studies on keloid. J Natl Med Assoc 1975, 67(6):428-432.
• [24]Lawrence H: Keloid (alibert) and intractable patches of chronic inflammation of the skin treated by scarification. Br Med J 1898, 2(1959):151.
• [25]Addison T: On the keloid of alibert, and on true keloid. Med Chir Trans 1854, 37:27-47.
• [26]Omo-Dare P: Yoruban contributions to the literature on keloids. J Natl Med Assoc 1973, 65(5):367-372.
• [27]Louw L: Keloids in rural black South Africans. Part 1: general overview and essential fatty acid hypotheses for keloid formation and prevention. Prostaglandins Leukot Essent Fatty Acids 2000, 63(5):237-245.
• [28]Marsh VM, Kamuya DM, Mlamba AM, Williams TN, Molyneux SS: Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya. BMC Med Ethics 2010, 11:13.
• [29]Rotimi C, Leppert M, Matsuda I, Zeng C, Zhang H, Adebamowo C, Ajayi I, Aniagwu T, Dixon M, Fukushima Y, Macer D, Marshall P, Nkwodimmah C, Peiffer A, Royal C, Suda E, Zhao H, Wang VO, McEwen J, International HapMap Consortium: Community engagement and informed consent in the International HapMap project. Community Genet 2007, 10(3):186-198.
• [30]Spruill IJ: Enhancing recruitment of African-American families into genetic research: lessons learned from Project SuGar. J Community Genet 2010, 1(3):125-132.
• [31]Wright GE, Koornhof PG, Adeyemo AA, Tiffin N: Ethical and legal implications of whole genome and whole exome sequencing in African populations. BMC Med Ethics 2013, 14:21.
• [32]Marneros AG, Norris JE, Watanabe S, Reichenberger E, Olsen BR: Genome scans provide evidence for keloid susceptibility loci on chromosomes 2q23 and 7p11. J Invest Dermatol 2004, 122(5):1126-1132.
• [33]Nakashima M, Chung S, Takahashi A, Kamatani N, Kawaguchi T, Tsunoda T, Hosono N, Kubo M, Nakamura Y, Zembutsu H: A genome-wide association study identifies four susceptibility loci for keloid in the Japanese population. Nat Genet 2010, 42(9):768-771.
• [34]Reichenberger E: Why do we know so much about wound healing– and yet so little about Keloids? J Regen Med 2012, 1(1):1000e1101.
• [35]Adeyemo AA, Chen G, Chen Y, Rotimi C: Genetic structure in four West African population groups. BMC Genet 2005, 6:38.
• [36]Bryc K, Auton A, Nelson MR, Oksenberg JR, Hauser SL, Williams S, Froment A, Bodo JM, Wambebe C, Tishkoff SA, Bustamante CD: Genome-wide patterns of population structure and admixture in West Africans and African Americans. Proc Natl Acad Sci U S A 2010, 107(2):786-791.
• [37]Adepoju JA: A study of health beliefs and practices of the Yoruba, Journal of Cultural Diversity. J Cult Divers 2010, 19(2):36-43.
• [38]Oyetunde MO: Perception and management of cancer among the Yoruba in Ibadan. Nigeria Afr J Med Sci 2010, 39(3):181-192.
• [39]Olugbile O, Zachariah MP, Kuyinu A, Coker A, Ojo O, Isichei B: Yoruba world view and the nature of psychotic illness. Afr J Psychiatry 2009, 12(2):149-156.
• [40]Olasoji HO, Ugboko VI, Arotiba GT: Cultural and religious components in Nigerian parents’ perceptions of the aetiology of cleft lip and palate: implications for treatment and rehabilitation. Br J Oral Maxillofac Surg 2007, 45(4):302-305.
• [41]Taylor JY: Recruitment of three generations of African American women into genetics research. J Transcult Nurs 2009, 20(2):219-226.
• [42]Ogunrin OA, Ogundiran TO, Adebamowo C: Development and pilot testing of an online module for ethics education based on the Nigerian National Code for Health Research Ethics. BMC Med Ethics 2013, 14:1.
• [43]Wonkam A, Muna W, Ramesar R, Rotimi CN, Newport MJ: Capacity-building in human genetics for developing countries: initiatives and perspectives in sub-Saharan Africa. Public Health Genomics 2010, 13(7–8):492-494.
• [44]Igbe MA, Adebamowo CA: Qualitative study of knowledge and attitudes to biobanking among lay persons in Nigeria. BMC Med Ethics 2012, 13:27.
• [45]Marshall PA, Adebamowo CA, Adeyemo AA, Ogundiran TO, Vekich M, Strenski T, Zhou J, Prewitt TE, Cooper RS, Rotimi CN: Voluntary participation and informed consent to international genetic research. Am J Public Health 2006, 96(11):1989-1995.
• [46]Ogundiran TO: Africa must come on board the genomics bandwagon. Genomic Soc Policy 2005, 1(3):66-77.
• [47]Malaria Genomic Epidemiology N: A global network for investigating the genomic epidemiology of malaria. Nature 2008, 456(7223):732-737.