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Biobanks in Low Resource Contexts

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Book cover Biobanking of Human Biospecimens

Abstract

A rise is expected in non-communicable disease burden in low and middle income countries (LMICs) in the next 20 years. Stratified medicine and target therapies promise to ensure response to drugs and exclude adverse effects, but the genetic background of populations from LMICs is rarely addressed.

Biobanks are the currency for representation of LMICs’ populations in scientific research. They can provide populations in these regions with the equitable opportunity for research to include their particular genetic and environmental make-up and provide solutions that are also applicable to them.

Lack of foundation healthcare services, aligned with the need for biobank infrastructure to be compatible with local conditions and conservation methods, affect the development of biobanks. Underlying this is the insufficiency of medical personnel expertise, trained technicians and researchers to provide diagnostic data annotation, to execute basic biobanking services and biobanking research. New technologies and increased annotation will permit harmonization of these biobanks.

Inconsistent regulations and ethical guidelines including cultural and religious limitations for acquiring samples/information and low prioritization or lack of understanding of the importance of biobanking in a public health context by government officials and policymakers impede benefit sharing and sustainability.

New models for ethical governance will address cultural and social structures that exist in LMICs and provide benefit sharing for biobankers, researchers and contributing populations. Research collaborations can facilitate economic investment, training, collaboration, publications, technology transfer, and health care improvements. Together with institutional investment to sustain permanent technical and scientific personnel, they can provide sustainability.

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References

  1. Garrafa V, Solbakk JH, Vidal S, Lorenzo C (2010) Between the needy and the greedy: the quest for a just and fair ethics of clinical research. J Med Ethics 36(8):500–504

    Article  PubMed  Google Scholar 

  2. WHO factsheet: cancer updated February (2014) http://appswhoint/iris/bitstream/10665/85761/2/9789240690837_engpdf?ua=1

    Google Scholar 

  3. (2013) ILWCS: http://www.iarc.fr/en/media-centre/pr/2013/pdfs/pr223_E.pdf. 2014

  4. Jemal A (2011) Global cancer statistics. CA Cancer J Clin 61:22

    Article  Google Scholar 

  5. World Health Report 2013: research for universal health coverage. http://appswhoint/iris/bitstream/10665/85761/2/9789240690837_engpdf

    Google Scholar 

  6. Sgaier SK (2007) Biobanks in developing countries: needs and feasibility. www.sciencemag.org. 318

  7. Hanahan D, Weinberg RA (2011) Hallmarks of cancer: the next generation. Cell 144(5):646–674

    Article  CAS  PubMed  Google Scholar 

  8. Genomes Project C, Abecasis GR, Auton A, Brooks LD, DePristo MA, Durbin RM, Handsaker RE, Kang HM, Marth GT, McVean GA (2012) An integrated map of genetic variation from 1,092 human genomes. Nature 491(7422):56–65

    Google Scholar 

  9. International HapMap C, Altshuler DM, Gibbs RA, Peltonen L, Altshuler DM, Gibbs RA, Peltonen L, Dermitzakis E, Schaffner SF, Yu F et al (2010) Integrating common and rare genetic variation in diverse human populations. Nature 467(7311):52–58

    Google Scholar 

  10. Cook MB, Wang Z, Yeboah ED, Tettey Y, Biritwum RB, Adjei AA, Tay E, Truelove A, Niwa S, Chung CC et al (2014) A genome-wide association study of prostate cancer in West African men. Hum Genet 133(5):509–521

    Article  CAS  PubMed  Google Scholar 

  11. Wang Q, Lv H, Lv W, Shi M, Zhang M, Luan M, Zhu H, Zhang R, Jiang Y (2015) Genome-wide haplotype association study identifies BLM as a risk gene for prostate cancer in Chinese population. Tumour Biol 36(4):2703–2707

    Article  CAS  PubMed  Google Scholar 

  12. Menegon M, Durand P, Menard D, Legrand E, Picot S, Nour B, Davidyants V, Santi F, Severini C (2014) Genetic diversity and population structure of Plasmodium vivax isolates from Sudan, Madagascar, French Guiana and Armenia. Infect Genet Evol 27:244–249

    Article  PubMed  Google Scholar 

  13. Campbell MC, Tishkoff SA (2008) African genetic diversity: implications for human demographic history, modern human origins, and complex disease mapping. Annu Rev Genomics Hum Genet 9:403–433

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  14. Tan DS, Mok TS, Rebbeck TR (2016) Cancer genomics: diversity and disparity across ethnicity and geography. J Clin Oncol 34(1):91–101

    Article  CAS  PubMed  Google Scholar 

  15. Miwa H, Go MF, Sato N (2002) H. pylori and gastric cancer: the Asian enigma. Am J Gastroenterol 97(5):1106–1112

    Article  PubMed  Google Scholar 

  16. Ma BB, Hui EP, Mok TS (2010) Population-based differences in treatment outcome following anticancer drug therapies. Lancet Oncol 11(1):75–84

    Article  PubMed  Google Scholar 

  17. Harris JR, Burton P, Knoppers BM, Lindpaintner K, Bledsoe M, Brookes AJ, Budin-Ljosne I, Chisholm R, Cox D, Deschenes M et al (2012) Toward a roadmap in global biobanking for health. Eur J Hum Genet 20(11):1105–1111

    Article  PubMed  PubMed Central  Google Scholar 

  18. Adewole I, Martin DN, Williams MJ, Adebamowo C, Bhatia K, Berling C, Casper C, Elshamy K, Elzawawy A, Lawlor RT et al (2014) Building capacity for sustainable research programmes for cancer in Africa. Nat Rev Clin Oncol 11(5):251–259

    Article  PubMed  PubMed Central  Google Scholar 

  19. Rudan I, Marusic A, Campbell H (2011) Developing biobanks in developing countries. J Glob Health 1(1):2–4

    PubMed  PubMed Central  Google Scholar 

  20. Campos AH, Silva AA, Mota LD, Olivieri ER, Prescinoti VC, Patrao D, Camargo LP, Brentani H, Carraro DM, Brentani RR et al (2012) The value of a tumor bank in the development of cancer research in Brazil: 13 years of experience at the A C Camargo hospital. Biopreserv Biobank 10(2):168–173

    Article  PubMed  Google Scholar 

  21. Zain RB, Athirajan V, Ghani WM, Razak IA, Raja Latifah RJ, Ismail SM, Sallam AA, Bustam AZ, Rahman ZA, Hussien A et al (2013) An oral cancer biobank initiative: a platform for multidisciplinary research in a developing country. Cell Tissue Bank 14(1):45–52

    Article  CAS  PubMed  Google Scholar 

  22. Brody H, Hunt LM (2006) BiDil: assessing a race-based pharmaceutical. Ann Fam Med 4(6):556–560

    Article  PubMed  PubMed Central  Google Scholar 

  23. Matimba A, Oluka MN, Ebeshi BU, Sayi J, Bolaji OO, Guantai AN, Masimirembwa CM (2008) Establishment of a biobank and pharmacogenetics database of African populations. Eur J Hum Genet 16(7):780–783

    Article  CAS  PubMed  Google Scholar 

  24. Daar AS, Singer PA (2005) Pharmacogenetics and geographical ancestry: implications for drug development and global health. Nat Rev Genet 6(3):241–246

    Article  CAS  PubMed  Google Scholar 

  25. Sirugo G, Schim van der Loeff M, Sam O, Nyan O, Pinder M, Hill AV, Kwiatkowski D, Prentice A, de Toma C, Cann HM et al A national DNA bank in The Gambia, West Africa, and genomic research in developing countries. Nat Genet 36(8):785–786

    Google Scholar 

  26. Human heredity and health in Africa. wwwh3africaorg 2011

    Google Scholar 

  27. Consortium HA, Rotimi C, Abayomi A, Abimiku A, Adabayeri VM, Adebamowo C, Adebiyi E, Ademola AD, Adeyemo A, Adu D et al (2014) Research capacity. Enabling the genomic revolution in Africa. Science 344(6190):1346–1348

    Google Scholar 

  28. Hutt MS, Spencer H (1982) Histopathology services for developing countries. Br Med J (Clin Res Ed) 285(6351):1327–1329

    Article  CAS  Google Scholar 

  29. Yachida S, Jones S, Bozic I, Antal T, Leary R, Fu B, Kamiyama M, Hruban RH, Eshleman JR, Nowak MA et al (2010) Distant metastasis occurs late during the genetic evolution of pancreatic cancer. Nature 467(7319):1114–1117

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  30. Nelson AM, Milner DA, Rebbeck TR, Iliyasu Y (2016) Oncologic care and pathology resources in Africa: survey and recommendations. J Clin Oncol 34(1):20–26

    Article  CAS  PubMed  Google Scholar 

  31. AAMC (2012) 2012 physician specialty data book. American Association of Medical Colleges, Washington DC

    Google Scholar 

  32. Kaschula RO (2013) The practice of pathology in Africa. Arch Pathol Lab Med 137(6):752–755

    Article  PubMed  Google Scholar 

  33. Cancer Incidence in Five Continents, vol. IX (2007) http://wwwiarcfr/en/publications/pdfs-online/epi/sp160/CI5vol9pdf

    Google Scholar 

  34. African Cancer Registry Network. African Cancer Registry Network [Online] http://wwwafcrnorg (2013)

    Google Scholar 

  35. Parkin M (2013) http://globalhealthdynamics.co.uk/cc2013/wp-content/uploads/2013/04/55-59-Maxwell-Parkin-incl-T-page_2013.pdf). Cancer Control 2013, epidemiology

    Google Scholar 

  36. Stefan DC, Masalu N, Amadori D, Booteghi M, Mendy M, Othieno-Aabinya NA, Ngoma T, Asirwa F, Balogun OR, Ngwa W et al (2015) Pathology and oncology in Africa: education and training for the future in cancer research—East regional meeting. Infect Agent Cancer 10:7

    Article  Google Scholar 

  37. Peto TJ, Mendy ME, Lowe Y, Webb EL, Whittle HC, Hall AJ (2014) Efficacy and effectiveness of infant vaccination against chronic hepatitis B in the Gambia Hepatitis Intervention Study (1986-90) and in the nationwide immunisation program. BMC Infect Dis 14:7

    Article  PubMed  PubMed Central  Google Scholar 

  38. Declaration of Helsinki. http://wwwwmanet/en/30publications/10policies/b3/2008

    Google Scholar 

  39. Kotalik J, Martin G (2016) Aboriginal health care and bioethics: a reflection on the Teaching of the Seven Grandfathers. Am J Bioeth 16(5):38–43

    Article  PubMed  Google Scholar 

  40. Garvey G, Towney P, McPhee JR, Little M, Kerridge IH (2004) Is there an Aboriginal bioethic? J Med Ethics 30(6):570–575

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  41. Metza T, Gaieb JBR The African ethic of Ubuntu/Botho: implications for research on morality. J Moral Educ 39(3):18

    Google Scholar 

  42. Chuwa LT (2014) African indigenous ethics in global bioethics. Advancing Global Bioethics, Springer Science

    Book  Google Scholar 

  43. International Compilation of Human Research Standards 2013 edition. http://wwwhhsgov/ohrp/international/intlcompilation/intlcomp2013pdf

    Google Scholar 

  44. Staunton C, Moodley K (2013) Challenges in biobank governance in sub-Saharan Africa. BMC Med Ethics 14:35

    Article  PubMed  PubMed Central  Google Scholar 

  45. https://webapps.sph.harvard.edu/live/gremap/files/ke_NCST_guidelines.pdf

    Google Scholar 

  46. Marodin G, Franca P, Rocha JC, Campos AH (2012) Biobanking for health research in Brazil: present challenges and future directions. Rev Panam Salud Publica 31(6):523–528

    Article  PubMed  Google Scholar 

  47. The Personal Data (Protection) Bill (2013) http://cis-indiaorg/internet-governance/blog/the-personal-data-protection-bill-2013

    Google Scholar 

  48. Emanuel EJ, Wendler D, Killen J, Grady C (2004) What makes clinical research in developing countries ethical? The benchmarks of ethical research. J Infect Dis 189(5):930–937

    Article  PubMed  Google Scholar 

  49. Budimir D, Polasek O, Marusic A, Kolcic I, Zemunik T, Boraska V, Jeroncic A, Boban M, Campbell H, Rudan I (2011) Ethical aspects of human biobanks: a systematic review. Croat Med J 52(3):262–279

    Article  PubMed  PubMed Central  Google Scholar 

  50. Alfano SL (2013) Conducting research with human subjects in international settings: ethical considerations. Yale J Biol Med 86(3):315–321

    PubMed  PubMed Central  Google Scholar 

  51. Gottweis H, Lauss G (2012) Biobank governance: heterogeneous modes of ordering and democratization. J Community Genet 3(2):61–72

    Article  PubMed  Google Scholar 

  52. de Vries J, Bull SJ, Doumbo O, Ibrahim M, Mercereau-Puijalon O, Kwiatkowski D, Parker M (2011) Ethical issues in human genomics research in developing countries. BMC Med Ethics 12:5

    Article  PubMed  PubMed Central  Google Scholar 

  53. UNESCO (2005) Universal declaration on bioethics and human rights

    Google Scholar 

  54. Castellano MB (2004) Ethics of Aboriginal research. J Aborig Health 16

    Google Scholar 

  55. (2010) OECD guidelines on human biobanks and genetic research databases. Eur J Health Law 17:14

    Google Scholar 

  56. Igbe MA, Adebamowo CA (2012) Qualitative study of knowledge and attitudes to biobanking among lay persons in Nigeria. BMC Med Ethics 13:27

    Article  PubMed  PubMed Central  Google Scholar 

  57. Michener L, Cook J, Ahmed SM, Yonas MA, Coyne-Beasley T, Aguilar-Gaxiola S (2012) Aligning the goals of community-engaged research: why and how academic health centers can successfully engage with communities to improve health. Acad Med 87(3):285–291

    Article  PubMed  PubMed Central  Google Scholar 

  58. Tindana PO, Singh JA, Tracy CS, Upshur RE, Daar AS, Singer PA, Frohlich J, Lavery JV (2007) Grand challenges in global health: community engagement in research in developing countries. PLoS Med 4(9):e273

    Article  PubMed  PubMed Central  Google Scholar 

  59. Brunger F, Wall D (2016) “What do they really mean by partnerships?” Questioning the unquestionable good in ethics guidelines promoting community engagement in indigenous health research. Qual Health Res

    Google Scholar 

  60. Costello A, Zumla A (2000) Moving to research partnerships in developing countries. BMJ 321(7264):827–829

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  61. Upshur RE, Lavery JV, Tindana PO (2007) Taking tissue seriously means taking communities seriously. BMC Med Ethics 8:11

    Article  PubMed  PubMed Central  Google Scholar 

  62. Wonkam A, Kenfack MA, Muna WF, Ouwe-Missi-Oukem-Boyer O (2011) Ethics of human genetic studies in sub-Saharan Africa: the case of Cameroon through a bibliometric analysis. Dev World Bioeth 11(3):120–127

    Article  PubMed  Google Scholar 

  63. Andanda PA (2008) Human-tissue-related inventions: ownership and intellectual property rights in international collaborative research in developing countries. J Med Ethics 34(3):171–179

    Article  CAS  PubMed  Google Scholar 

  64. Lawlor RT, Sluss PM, Langer R, Sughayer MA, Igbe MA, Siddiqui K, De Blasio P, Duma B, Mendy M, Chabannon C et al (2013) European, Middle Eastern, and African Society for Biopreservation and Biobanking (ESBB). 2012. Conference session on biobanking in emerging countries. Biopreserv Biobank 11(3):176–181

    Article  PubMed  Google Scholar 

  65. Mendy M, Caboux E, Sylla BS, Dillner J, Chinquee J, Wild C, participants BCs (2014) Infrastructure and facilities for human biobanking in low- and middle-income countries: a situation analysis. Pathobiology 81(5–6):252–260

    PubMed  Google Scholar 

  66. (2013) Handbook for cancer research in Africa, WHO Regional Office for Africa. http://www.afro.who.int/en/clusters-a-programmes/dpc/non-communicable-diseases-managementndm/npc-publications.html

  67. Farronato M, Filippini D, Rossetti C, Rusev B, Lawlor RT, Scarpa A (2012) Vacuum packed transport maintains the RNA quality. Biopreserv Biobank 10(5):A43

    Google Scholar 

  68. Arai RJ, Mano MS, de Castro G Jr, Diz Mdel P, Hoff PM (2010) Building research capacity and clinical trials in developing countries. Lancet Oncol 11(8):712–713

    Article  PubMed  Google Scholar 

  69. Weinstein RS, Graham AR, Lian F, Braunhut BL, Barker GR, Krupinski EA, Bhattacharyya AK (2012) Reconciliation of diverse telepathology system designs. Historic issues and implications for emerging markets and new applications. APMIS 120(4):256–275

    Article  PubMed  Google Scholar 

  70. Adesina A, Chumba D, Nelson AM, Orem J, Roberts DJ, Wabinga H, Wilson M, Rebbeck TR (2013) Improvement of pathology in sub-Saharan Africa. Lancet Oncol 14(4):e152–e157

    Article  PubMed  Google Scholar 

  71. (2009) Association of Research Administrators in Africa. http://araafricaorg

    Google Scholar 

  72. Cambon-Thomsen A (2004) The social and ethical issues of post-genomic human biobanks. Nat Rev Genet 5(11):866–873

    Article  CAS  PubMed  Google Scholar 

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Authors and Affiliations

  1. ARC-Net Applied Research on Cancer Centre, University of Verona, Verona, Italy

    Rita T. Lawlor PhD

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  1. Rita T. Lawlor PhD
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Correspondence to Rita T. Lawlor PhD .

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Editors and Affiliations

  1. Cancer Research, Institute for Advanced Biosciences, Inserm U1209 CNRS UMR 5309, Université Grenoble-Alpes, Grenoble, France

    Pierre Hainaut

  2. International Prevention Research Institute, Biopreservation and Biobanking, Kensington, Maryland, USA

    Jim Vaught

  3. Institute of Pathology, Medical University of Graz, Auenbruggerplatz 25, A-8036, Graz, Austria

    Kurt Zatloukal

  4. Biobanking and Biomolecular resources Research Infrastructure (BBMRI-ERIC), Graz, Austria

    Markus Pasterk

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Lawlor, R.T. (2017). Biobanks in Low Resource Contexts. In: Hainaut, P., Vaught, J., Zatloukal, K., Pasterk, M. (eds) Biobanking of Human Biospecimens. Springer, Cham. https://doi.org/10.1007/978-3-319-55120-3_10

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