Defining and negotiating the social value of research in public health facilities: Perceptions of stakeholders in a research-active province of South Africa

Bioethics

Volumn 31, Issue 2, 2017, Pages 128-135

  Lutge, Elizabeth ^a   Slack, Catherine ^b   Wassenaar, Douglas ^b  

^a KwaZulu Natal Department of Health   (South Africa)

^b UNIVERSITY OF KWAZULU NATAL   (South Africa)

Author keywords

Aspirational benefits; Collateral benefits; Gatekeepers; Researchers; Social value

Indexed keywords

CONSENSUS DEVELOPMENT; HEALTH CARE FACILITY; HEALTH CARE SYSTEM; HUMAN; INTERPERSONAL COMMUNICATION; PERCEPTION; PUBLIC HEALTH; SCIENTIST; SOUTH AFRICA; QUALITATIVE RESEARCH; SOCIAL PSYCHOLOGY;

HEALTH FACILITIES; HUMANS; NEGOTIATING; PERCEPTION; PUBLIC HEALTH; QUALITATIVE RESEARCH; SOCIAL VALUES; SOUTH AFRICA;

EID: 85009080632     PISSN: 02699702     EISSN: 14678519     Source Type: Journal    
DOI: 10.1111/bioe.12323     Document Type: Note

References (64)

1. The Nuremberg Code 1947. BMJ 1996; 313: 1448.
2. Council for International Organizations of Medical Sciences (CIOMS) (2002). International Ethical Guidelines for Biomedical Research Involving Human Subjects. Available at http://www.cioms.ch/ publications/guidelines/guidelines’nov’2002’blurb.htm Accessed on 2 November 201.
3. Council for International Organizations of Medical Sciences (CIOMS) (2015). International Ethical Guidelines for Biomedical Research Involving Human Subjects. Available from http://www.cioms. ch/index.php/12-newsflash/394-the-public-consultation-on-ethicalguidelines- is-now-closed
4. E.J. Emanuel, D. Wendler & C. Grady. What makes clinical research ethical? JAMA 2000; 283: 2701–2711;
5. E.J. Emanuel et al. What makes clinical research in developing countries ethical? The benchmarks of ethical research. J Infect Dis 2004; 189: 930–937;
6. E.J. Emanuel, D. Wendler & C. Grady. 2008. An ethical framework for biomedical research. In The Oxford Textbook of Clinical Research Ethics, E.J. Emanuel et al. New York: Oxford University Press.
7. Emanuel, Wendler & Grady. 2000, op. cit. note 4.
8. The Nuremberg Code 1947. BMJ 1996; 313: 1448.
9. Council for International Organizations of Medical Sciences (CIOMS) (2002). International Ethical Guidelines for Biomedical Research Involving Human Subjects. Available at http://www.cioms.ch/ publications/guidelines/guidelines’nov’2002’blurb.htm [accessed 2 November 2001].
10. Emanuel et al. 2004, op. cit. note 4; Emanuel, Wendler & Grady 2008, op. cit. note 4.
11. P.W. Geissler 2011. Studying Trial Communities: Anthropological and Historical Inquiries into Ethos, Politics and Economy of Medical Research in Africa. In Evidence, Ethos and Experiment: the Anthropology and History of Medical Research in Africa. P.W. Geissler & C. Molyneux, eds. New York: Berghahn Books; 2011. Available from: http://www.ncbi.nlm.nih.gov/books/NBK184571/
12. D.R. Wassenaar & N. Mamotte. 2012. Ethical issues and ethics reviews in social science research. In The Oxford handbook of international psychological ethics. M. Leach et al., eds. New York: Oxford University Press: 268-282.
13. M.O. Folayan et al. Debating Ethics in HIV Research: Gaps between Policy and Practice in Nigeria. Dev World Bioeth 2015; 15(3): 214–225;
14. M.O. Folayan, K.S. Oyedeji & O.A. Fatusi OA. Community Members’ Engagement with and Involvement in Genomic Research: Lessons to Learn from the Field. Dev World Bioeth 2015; 15(1): 1–7;
15. D. Allman, M.H. Ditmore & K. Kaplan. Improving Ethical and Participatory Practice for Marginalized Populations in Biomedical HIV Prevention Trials: Lessons from Thailand. PLOS ONE 2014; 9(6): e100058. doi:10.1371/ journal.pone.0100058;
16. K.F. King et al. Community engagement and the human infrastructure of global health research. BMC Med Ethics 2014; 15: 84. DOI: 10.1186/1472-6939-15-84;
17. J. Koen et al. ‘It Looks Like You Just Want Them When Things Get Rough’: Civil Society Perspectives on Negative Trial Results and Stakeholder Engagement in HIV Prevention Trials. Dev World Bioeth 2013; 13(3): 138–148;
18. K.M. MacQueen et al. 2012. Stakeholder Engagement Toolkit for HIV Prevention Trials. FHI 360. Available at https://www.fhi360.org/resource/stakeholderengagement- toolkit-hiv-prevention-trials;
19. UNAIDS/AVAC (2011). Good participatory practice: Guidelines for biomedical HIV prevention trials. Joint United Nations Programme on HIV/AIDS (UNAIDS). Geneva, Switzerland. Available at http://www.unaids.org/en/resources/documents/2011/20110629’JC1853’GPP’Guidelines’2011%20OK;
20. M. Ukpong & K. Peterson 2009. Oral Tenofovir Controversy II: Voices from the Field: A series of reports of the Oral Tenofovir Trials from the perspectives of Active Community Voices engaged on the field in Cambodia, Cameroon, Nigeria, Thailand and Malawi. NHVMAS 2009; P.0.Tindana et al. Grand Challenges in Global Health: Community Engagement in Research in Developing Countries. PLoS Med 2007; 4(9): e273. doi:10.1371/journal.pmed.0040273
21. D.M. Kamuya et al. ‘When they see us, it’s like they have seen the benefits! ‘: experiences of study benefits negotiations in community-based studies on the Kenyan coast. BMC Med Ethics. 2014; 15: 90. doi: 10.1186/1472-6939-15-90;
22. G.M. Lairumbi et al. Forms of benefit sharing in global health research undertaken in resource poor settings: a qualitative study of stakeholders’ views in Kenya. Philos Ethics Humanit Med. 2012 Jan 17; 7: 7. doi: 10.1186/1747-5341-7-7;
23. G.M. Lairumbi et al. Stakeholders understanding of the concept of benefit sharing in health research in Kenya: a qualitative study. BMC Med Ethics. 2011; 12: 20. doi: 10.1186/1472-6939-12-20;
24. S. Molyneux et al. Benefits and payments for research participants: Experiences and views from a research centre on the Kenyan coast. BMC Med Ethics 2012; 13: 13; DOI: 10.1186/1472-6939-13-13
25. G.M. Lairumbi et al. (2008). Promoting the social value of research in Kenya: Examining the practical aspects of collaborative partnerships using an ethical framework. Soc Sci Med 2008; 67; 734–747
26. E. Lutge. Perceptions and practices regarding research in provincial health facilities in KwaZulu-Natal, South Africa. Thesis for partial fulfilment of Masters of Social Science in Research Ethics through the University ofKwaZulu-Natal
27. F. Tanser et al. High Coverage of ART Associated with Decline in Risk of HIVAcquisition in RuralKwaZulu-Natal, South Africa. Science 2013; 339 (6122): 966–971. DOI:10.1126/science.1228160;
28. Q.A. Karim et al. Effectiveness and safety prevention of HIV infection in women. Science 2010; 329(5996): 1168-1174.
29. S. Singh & D.R. Wassenaar. Contextualising the role of the gatekeeper in social science research. S Afr J BL 2016; 9(1): 42–46. DOI:7196/SAJBL.465.
30. A. Tong, P. Sainsbury & J. Craig. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Qual Healthcare 2007; 19(6); 349–357.
31. P. Ulin, E. Robinson, E. Tolley & E. McNeill. 2002. Qualitative methods: A field guide for applied research in sexual and reproductive health. Research Triangle Park, NC: Family Health International.
32. V. Braun & V. Clarke. Using thematic analysis in psychology. Qual Res Psychol 2006; 3 (2): 77–101. ISSN 1478-0887
33. UNAIDS/AVAC (2011). Good participatory practice: Guidelines for biomedical HIV prevention trials. Joint United Nations Programme on HIV/AIDS (UNAIDS). Geneva, Switzerland. Available at http://www.unaids.org/en/resources/documents/2011/20110629’JC1853’GPP’Guidelines’2011%20OK
34. J. Green et al. Generating best evidence from qualitative research: the role of data analysis. Aust N Z J Public Health 2007; 31(6): 545–50.
35. L. Yardley. 2008. Demonstrating validity in qualitative psychology. In Qualitative psychology: A practical guide to research methods. J. Smith, ed. London: Sage: 235–268.
36. R. Boyatzis. 1998. Transforming qualitative information: Thematic analysis and code development. London: Sage: 152.
37. M.N. Marshall. Sampling for qualitative research. Fam Pract. 1996; 13(6): 522–525.
38. N. King. Defining and Describing BenefitAppropriately in Clinical Trials. J Law Med Ethics 2000; 28: 332–343.
39. G.M. Lairumbi et al. Forms of benefit sharing in global health research undertaken in resource poor settings: a qualitative study of stakeholders’ views in Kenya. Philos Ethics Humanit Med. 2012; 7: 7. doi: 10.1186/1747-5341-7-7.
40. Kamuya DM, Marsh V, Njuguna P, Munywoki P, Parker M, Molyneux S. ‘When they see us, it’s like they have seen the benefits!’: experiences of study benefits negotiations in community-based studies on the Kenyan coast. BMC Med Ethics. 2014; 15: 90. doi: 10.1186/1472- 6939-15-90.
41. Lairumbi et al., op. cit note 26.
42. Emanuel et al. 2004, op. cit. note 4.
43. Emanuel et al. 2008, op. cit. note 4.
44. Emanuel et al. 2004, op. cit note 4; Emanuel et al. 2008, op. cit. note 4.
45. Lairumbi et al. op. cit. note 26.
46. Kamuya et al. op. cit. note 27.
47. B.M. Mayosi & S.R. Benatar. Health and health care in South Africa–20 years after Mandela. N Engl J Med. 2014; 371(14): 1344–53. doi: 10.1056/NEJMsr1405012. Epub 2014 Sep 29.
48. Leibbrandt M, Woolard I, Finn l, Argent J. (2010). ‘Trends in South African Income Distribution and Poverty since the Fall of Apartheid’, Papers, No. 101, OECD Publishing. https://doi.org/10.1787/ 5kmms0t7p1ms-en. Available at http://www.oecd-ilibrary.income-distribution- and-poverty-since-the-fall-of-apartheid’5kmms0t7p1ms-en Accessed on 20th October 2015.
49. S.R. Benatar & P. Singer P. Responsibilities in international research: a new look revisited. J Med Ethics 2010; 36(4): 194–7.
50. Emanuel 2000, op. cit. note 4.
51. Participants. Moral standards for research in developing countries: From ‘reasonable availability’ to ‘fair benefits’. Hastings Cent Rep 2004; 34(3): 17-27.
52. A. London & K. Zollman. Research at the auction block: Problems for the Fair Benefits approach to international research. Hastings Cent Rep 2010; 40 (4): 34–45;
53. U. Schüklenk. For-profit clinical trials in developing countries – those troublesome patient benefits. Am J Bioeth 2010; 10(6), 52–53;
54. R.K. Lie. 2010. The Fair Benefits Approach Revisited. Hastings Cent Rep 40(4): 3–3. Project MUSE. Available at: https://muse. jhu.edu/ 40 Emanuel 2004, op. cit. note 4.
55. Participants, op. cit. note 38.
56. Lairumbi et al. op. cit. note 26.
57. S.R. Benatar. Moral imagination: The missing component in global health. PLoS Med 2005; 2(12): e400.
58. N. Barsdorf & D. Wassenaar. Racial differences in public perceptions of voluntariness of medical research participants in South Africa. Soc Sci Med 2005; 60(5):1087–98.
59. N.A. Christakis. Ethics are local: engaging cross-cultural variation in the ethics for clinical research. Soc Sci Med. 1992; 35(9): 1079-91;
60. S. Benatar. Reflections and recommendations on research ethics in developing countries. Soc Sci Med 2002; 54: 1131–1141.
61. D. Allman, M.H. Ditmore & K. Kaplan. Improving Ethical and Participatory Practice for Marginalized Populations in Biomedical HIV Prevention Trials: Lessons from Thailand. PLOS ONE 2014; 9(6): e100058. doi:10.1371/journal.pone.0100058
62. Emanuel 2004, op. cit. note 4.
63. UNAIDS/AVAC, 2011. Good participatory practice: Guidelines for biomedical HIV prevention trials. Joint United Nations Programme on HIV/AIDS (UNAIDS). Geneva, Switzerland. Available at http://www.unaids.org/en/resources/documents/2011/20110629’JC1853’GPP’ Guidelines’2011%20OK
64. G.M. Lairumbi et al. Promoting the social value of research inKenya: Examining the practical aspects of collaborative partnerships using an ethical framework. Soc Sci Med 2008; 67; 734–747