Qualitative study of knowledge and attitudes to biobanking among lay persons in Nigeria

BMC Medical Ethics

Clement A Adebamowo²  Michael A Igbe¹ 

[1] Department of Surgery, Faculty of Clinical Sciences,West African Bioethics Training Program, University of Ibadan, Ibadan, Nigeria;Institute of Human Virology, CBD, FCT, 252 Herbert Macaulay Way, Abuja, Nigeria

关键词: Nigeria;    Public perspectives;    Non-communicable diseases;    Biobanking;   

Others  :  800017
DOI  :  10.1186/1472-6939-13-27

 received in 2012-09-05, accepted in 2012-10-10,  发布年份 2012

【 摘 要 】

Background

Interest in biobanking for collection of specimens for non-communicable diseases research has grown in recent times. This paper explores the perspectives of Nigerians on donation of specimen for the biobanking research.

Methods

We conducted 16 Focus Group Discussions (FGD) with individuals from different ethnic, age and socio-economic groups in Kano (North), Enugu (Southeast), Oyo States (Southwest) and Abuja, the Federal Capital Territory (Central) of Nigeria. We used topic guides and prompt statements to explore the knowledge and understanding of interviewees to general issues about biobanking of biospecimens, their use and specifically about role of biobanking in non-communicable diseases research.

Results

A total of 123 individuals participated in 16 focus group discussions in 2011. Our participants had limited knowledge of the concept of biobanking but accepted it once they were educated about it and saw it as a worthwhile venture. Half of our study participants supported use of broad consent, a quarter supported restricted consent while the remaining quarter were in favour of tiered consent. Most discussants support shipment of their samples to other countries for further research, but they prefer those collaborations to be done only with competent, ethical researchers and they would like to receive feedback about such projects. The majority preferred health care as a benefit from participation, particularly for any unexpected condition that may be discovered during the course of the research instead of financial compensation. Participants emphasized the need to ensure that donated samples were not used for research that contradicts their religious beliefs.

Conclusions

Our study demonstrates that our participants accepted biobanking once they understand it but there were different attitudes to elements of biobanking such as type of consent. Our study highlights the need to carefully document population attitudes to elements of modern scientific research and the consenting process.

【 授权许可】

   
2012 Igbe and Adebamowo; licensee BioMed Central Ltd.

【 参考文献 】

• [1]Hoeyer K: The Ethics of Research Biobanking: A Critical Review of the Literature. Biotech and Genetic Eng Reviews 2008, 25:429-452.
• [2]Cambon-Thomsen A, Rial-Sebbag E, Knoppers BM: Trends in ethical and legal frameworks for the use of human biobanks. European Resp Journal 2007, 30:373-382.
• [3]Elger BS, Caplan AL: Consent and anonymization in research involving biobanks: Differing terms and norms present serious barriers to an international framework. EMBO Report 2006, 7:661-666.
• [4]Conference on Harmonising Biobank Research: Maximising Value – MaximisingUse. 2009. Available at:http://www.functionalgenomics.org.uk webcite.
• [5]Dushenes M, Salle C: Accountability in population biobanking: comparative approaches. Journal of Law, Med and Ethics 2005, 33(1):40-53.
• [6]Dickenson D: Human tissue and global ethics. Genomics Society Policy 2005, 1:41-53.
• [7]Dickenson D: Consent, commodification and benefit-sharing in genetic research. Developmental World Bioethics 2004, 4:109-124.
• [8]Emmanuel EJ, Weijer C: Protecting communities in biomedical research. Science 2000, 289:1142-1144.
• [9]Capron AM, Mauron A, Elger BS, Boggio A, Ganguli-Mitra A, et al.: Ethical norms and the international governance of genetic databases and biobanks: findings from an international study. Kennedy Institute Ethics Journal 2009, 19:101-124.
• [10]Steinberg K, Beck J, Nickerson D, Garcia-Closas M, Gallagher M, et al.: DNA banking for epidemiologic studies: a review of current practices. Epidemiology 2002, 13:246-254.
• [11]CCNE: Ethical Problems Raised by the Collected Biological Material and Associated Information Data: ‘Biobanks’, ‘Biolibraries’. Paris: French National Advisory Bioethics Committee; 2003. http://www.ccneethique. fr/english/pdf/avis077.pdf webcite.
• [12]Godard B, Schmidtke J, Cassiman JJ, Ayme S: Data storage and DNA banking for biomedical research: informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective. Eur J Hum Genet 2003, 11(Suppl 2):S88-S122.
• [13]Caze De Montgolfier S: Collecte, Stockage et Utilisation des Produits du Corps Humain dans le Cadre des Recherches en Génétique: État des Lieux Historique, Éthique et Juridique; Analyse des Pratiques au Sein des Biothèques. Paris: Thesis, Univ. René Descartes; 2002.
• [14]Greely HT: Informed consent and other ethical issues in human population genetics. Ann Review Genetic 2001, 35:785-800.
• [15]Nationaler Ethikrat: Biobanks for research. Berlin: German National Ethics Council; 2004. http://www.nationalerethikrat.de/_english/publications/Opinion_Biobanks-for-research.pdf webcite.
• [16]Wendler D, Emanuel E: The debate over research on stored biological samples: what do sources think? Arch of Int Medicine 2002, 162:1457-1462.
• [17]Ashburn TT, Wilson SK, Eisenstein BI: Human tissue research in the genomic era of medicine: balancing individual and societal interests. Arch of Inter Medicine 2000, 160:3377-3384.
• [18]Bauer K, Taub S, Parsi K: Ethical issues in tissue banking for research: a brief review of existing organizational policies. Theoretical Medical Bioethics 2004, 25:143-155.
• [19]Maschke KJ, Murray TH: Ethical issues in tissue banking for research: the prospects and pitfalls of setting international standards. Theoretical Medicine 2004, 25:143-155.
• [20]UNESCO: Bioethics Committee. International Declaration on Human Genetic Data. 2003, 27. http://unesdoc.unesco.org/images/0013/001312/1312 04e.pdf webcite.
• [21]Knoppers BM (Ed): Human DNA: Law and Policy. International and Comparative Perspectives. Boston: Kluwer Law International; 1997.
• [22]Anderlik MR, Rothstein MA: Privacy and confidentiality of genetic information: what rules for the new science? Ann Review of Genomics Human Genetics 2001, 2:401-433.
• [23]National Code of Health Research Ethics: National Health Research Ethics Committee, Federal Ministry of Health Web site. 2007. Available at:http://www.nhrec.net webcite.
• [24]National Bioethics Advisory Commission USA. (NBACa): Research Involving Human Biological Materials: Ethical Issues and Policy Guidance, Vol I. Rockville, MD, USA: National Bioethics Advisory Commission; 1999.
• [25]Hoeyer K: Donors perceptions of consent to and feedback from biobank research: Time to acknowledge diversity? Public Health Genomics 2010, 13:345-352.
• [26]Busby H: Biobanks, bioethics and concepts of donated blood in the UK. Sociology of Health Illness 2006, 28:850-865.
• [27]Hoeyer K: ‘Science is really needed – that’s all I know’: informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden. New Genetic Society 2003, 22:229-244.
• [28]mo myx: UK Biobank Web site. 2009. Available at:http://www.ukbiobank.ac.uk webcite. Accessed June 29.
• [29]me myx: NUgene Project Web site. Northwestern University; 2009. Available at: www.nugene.org webcite.
• [30]Kaiser Permanente Division of Research: Research program on genes, environment, and health. 2009. Available at:http://www.dor.kaiser.org/external/Home_Default.aspx webcite. Accessed June 29.
• [31]World Health Organization: Proposed international guidelines on ethical issues in medical genetics and genetic services. 2009. Available at: http://www.who.int/genomics/publications/en/index1. html webcite. Accessed June 29.
• [32]Kohane IS, Mandl KD, Taylor PL, Holm IA, Nigrin DJ, Kunkel LM: Medicine: reestablishing the researcher-patient compact. Science 2007, 316:836-837.
• [33]Maschke KJ: Navigating an ethical patchwork—human gene banks. National Biotechnology 2005, 5:539-545.
• [34]Cambon-Thomsen A: The social and ethical issues of post-genomic human biobanks. Nature Review Genetics 2004, 5:6-13.
• [35]HUGO (Human Genome Organisation): Ethics Committee: Statement on DNA sampling control and access. Genome Digest 1999, 6:8-9.
• [36]White MT, Gamm J: Informed consent for research on stored blood and tissue samples: a survey of institutional review board practices. Accountability in Research 2002, 9:1-16.
• [37]Maschke KJ: “Wanted: Human biospecimens.”. Hast Cent Rep 2010, 5(40):21-23.
• [38]Kohane I, Taylor PL: “Multidimensional results reporting to participants in genomic studies: getting it right,”. Science Trans Medicine 2010, 37(2):1-4.
• [39]Eriksson S, Helgesson G: Anonymization and withdrawal from biobank research. Eur Journal of Human Genetics 2005, 13:1071-1076.
• [40]Frazier L, Sparks E, Sanner JE, Henderson M: Biobanks and biomarker research in cardiovascular disease. Journal of Cardiovascular Nurses 2008, 2:153-158.
• [41]Rothstein MA: The role of IRBs in research involving commercial biobanks. Journal of Law and Medicine Ethics 2002, 30:105-108.
• [42]Bellivier F, Noiville C, Ghestin J (Eds): Contrats et vivant. Les droits de la circulation des resources biologiques. [Contracts and Living Elements: Rights on Circulation of Biological Resources.]. France: LGDJ; 2006.
• [43]Council of Europe: Recommendation of the Committee of Ministers to Member States on Research on Biological Material of Human Origin. Strasbourg; 2006. www.coe.int/t/e/legal_affairs/legal_co-operation/bioethics/ texts_and_documents/Rec_2006_4.pdf webcite Date last accessed: July 15, 2011.