Views of providers and clients on feedback and benefit sharing in studiesusing biological materials in Eldoret Kenya by Violet Naanyu 1, Eunice Kamaara1, Alfred Kirui2, Hillary Koros2, Daniel Lagat2, Singh Ilina3, Edith KamaruKwobah4, Lukoye Atwoli 1
Article Sidebar
Main Article Content
Abstract
Context: The use of biological materials raises diverse ethical concerns and there is
insufficient research into the views of stakeholders on these concerns.
Aims: This study investigated healthcare providers’ (HCPs) and clients’ perspectives on
giving feedback about biological samples that are used in research and sharing of
subsequent benefits. Settings and Design: Using a qualitative in-depth interviewing approach, this study investigated perspectives on feedback and benefit sharing in studies using biological
materials. We engaged HCPs (doctors, clinical officers, nurses, and laboratory
technicians) and clients from the Moi Teaching and Referral Hospital, Kenya.
Methods and Material: Vignettes and open-ended questions were used, and all sessions
were audio recorded, transcribed, then coded and summarized thematically.
Results: We found no substantive differences between the perspectives of HCPs and
clients. Participants desired that sample donors were provided with feedback and
support for their healthcare. Community-level feedback and initiation of health
development projects were viewed as valuable. Participants lauded the global
dissemination of findings and sharing of benefits ensuing from the research.
Conclusions: Healthcare providers and clients in Eldoret Kenya appreciate the use of
biological materials in research. They believe in feedback and benefit sharing at individual
and community levels, and in broad dissemination of the research findings. All research
stakeholders should be encouraged to plan and implement contextualized dissemination
of research findings. In addition, feedback on research findings and equitable benefit
sharing should be strengthened.
Downloads
Article Details
Section
References
1. Zatloukal K, Stumptner C, Kungl P, Mueller H. Biobanks in personalized medicine. Expert
Review of Precision Medicine and Drug Development. Taylor and Francis Ltd
2018;3:265-273
2. Doucet M, Yuille M, Georghiou L, Dagher G. Biobank sustainability: current status and
future prospects. J Biorepository Sci Appl Med 2017;5:1-7
3. de Vries J, Munung SN, Matimba A, et al. Regulation of genomic and biobanking
research in Africa: a content analysis of ethics guidelines, policies and procedures from
22 African countries. BMC Med Ethics 2017;18:8.
4. Staunton C, Moodley K. Challenges in biobank governance in Sub-Saharan Africa. BMC
Med Ethics 2013;14:35.
5. Aellah G, Chantler T, Geissler W. Global Health Research in an Unequal World: Ethics
Case Studies from Africa. CABI; 2016. Available from:
https://books.google.co.ke/books?id=5rU3jwEACAAJ. [Last accessed on 2023 Feb 23]
6. Kamuya D M, 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
7. Hayden C. Taking as Giving: Bioscience, Exchange, and the Politics of Benefit-sharing.
Social Studies of Science 2007:37:729-758.
8. Sudoi A, De Vries J, Kamuya D. A scoping review of considerations and practices for
benefit sharing in biobanking. BMC Med Ethics. 2021 Jul 27;22(1):102
9. Schroeder D. Benefit sharing: it's time for a definition. J Med Ethics, 2007;33:205-209
10. Bege D, & Kris D. An Ethically Accepted Concept but not well known: Research Ethics
Committees in Nigeria on the Concept of Benefit Sharing. J Clin Res Bioeth 2015;6:1-9.
11. Lévesque E, Joly Y, Simard J. Return of research results: general principles and
international perspectives. J Law Med Ethics 2011;39:583-592
12. Lairumbi GM, Michael P, Fitzpatrick R, English MC. Ethics in practice: the state of the
debate on promoting the social value of global health research in resource poor settings
particularly Africa. BMC Med Ethics 2011;12:22
13. Thorogood A, Joly Y, Knoppers BM, et al. An implementation framework for the
feedback of individual research results and incidental findings in research. BMC Med
Ethics 2014;15:88
14. Council for International Organizations of Medical Sciences. International Ethical
Guidelines for Biomedical Research Involving Human Subjects. Available from:
stories/CIOMS/guidelines/guidelines_nov_2002_blurb.htm. Published 2002. [Last
accessed on 2023 Feb 23]
15. MacNeil SD, Fernandez CV. Offering results to research participants. BMJ 2006;332:188-
189
16. Cox K, Moghaddam N, Bird L, Elkan R. Feedback of trial results to participants: a survey
of clinicians' and patients' attitudes and experiences. Eur J Oncol Nurs 2011;15:124-129
17. Shalowitz DI, Miller FG. Communicating the results of clinical research to participants:
attitudes, practices, and future directions. PLoS Med 2008;5:5
18. Halkoaho A, Pietilä AM, Vesalainen M, Vähäkangas K. Ethical aspects in tissue research:
thematic analysis of ethical statements to the research ethics committee BMC Med
Ethics 2012;13:20
19. Igbe MA, Adebamowo CA. Qualitative study of knowledge and attitudes to biobanking
among lay persons in Nigeria. BMC Med Ethics 2012;13:27
20. Tindana P, Molyneux CS, Bull S, Parker M. Ethical issues in the export, storage and reuse
of human biological samples in biomedical research: perspectives of key stakeholders
in Ghana and Kenya. BMC Med Ethics 2014;15:76
21. Naanyu, V. Social Context and Mental Illness Stigma in South Africa. Saarbrücken:
Violet Naanyu & Verlag Dr. Müller Publishing House Ltd. 2010. ISBN: 978-3-639-
26340-4
22. Hennink M, Kaiser BN. Sample sizes for saturation in qualitative research: A systematic
review of empirical tests. Soc. sci. med 2022; 292:114523.
23. Molyneux S, Mulupi S, Mbaabu L, Marsh V. Benefits and payments for research
participants: experiences and views from a research centre on the Kenyan coast. BMC
medical ethics 2012;13:1-5.
24. Marsh V, Kombe F, Fitzpatrick R, Williams TN, Parker M, Molyneux S. Consulting
communities on feedback of genetic findings in international health research: sharing
sickle cell disease and carrier information in coastal Kenya. BMC Med Ethics 2013;14:41
25. National Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research. The Belmont Report: Ethical Principles and Guidelines for the
Protection of Human Subjects of Research. Bethesda, MD: National Commission for the
Protection of Human Subjects of Biomedical and Behavioral Research; 1979. Available
from: https://www.hhs.gov/ohrp/regulations-and-policy/ belmont-report/index.html.
[Last accessed on 2023 Feb 23]
26. Cadigan RJ, Michie M, Henderson G, Davis AM, Beskow LM. The meaning of genetic
research results: reflections from individuals with and without a known genetic
disorder. J Empir Res Hum Res Ethics 2011;6:30-40
27. Beskow LM, Burke W. Offering individual genetic research results: context matters. Sci
Transl Med 2010;2:38
28. Vermeulen E, Boeckhout M, Zielhuis GA, Bakker R, Janssens AC, Schmidt MK. Biobanks
and the return of results to donors. Ned Tijdschr Geneeskd 2014;158:5
29. Long CR, Purvis RS, Flood-Grady E, et al. Health researchers' experiences, perceptions
and barriers related to sharing study results with participants. Health Res Policy Syst
2019;17:25
30. Alahmad G, Alzahrany H, Almutairi AF. Returning Results of Stored Biological Samples
and Biobanks: Perspectives of Saudi Arabian Biomedical Researchers. Biopreserv
Biobank 2020;18:395-402
31. Murphy, J., Scott, J., Kaufman, D., Geller, G., LeRoy, L., Hudson, K., Borchelt, R., &
Williams, S. (2008). Public Expectations for Return of Results from Large-Cohort
Genetic Research. Am J Bioeth, 8(11), 36–43.
32. Miller FA, Christensen R, Giacomini M, Robert JS. Duty to disclose what? Querying the
putative obligation to return research results to participants. J Med Ethic 2008;34:210-
213
33. Bemelmans SA, Tromp K, Bunnik EM, et al. Psychological, behavioral and social effects
of disclosing Alzheimer's disease biomarkers to research participants: a systematic
review. Alzheimers Res Ther 2016;8:46
34. Kingori P. The 'empty choice': A sociological examination of choosing medical research
participation in resource-limited Sub-Saharan Africa. Curr Sociol 2015;63:763-778
35. Naanyu V., Some F.F., & Siika A.M. (2014). "I understood some parts…but some were
confusing and hard to grasp”: Patients’ perception of informed consent forms and
clinical trials in Eldoret, Kenya. Perspect Clin Res 5(1), 20-24.
36. Lang, M., Zawati, M.H. Returning individual research results in international direct-toparticipant genomic research: results from a 31-country study. Eur J Hum Genet 30,
1132–1137 (2022)
37. Lázaro-Muñoz G, Torgerson L, Pereira S. Return of results in a global survey of
psychiatric genetics researchers: practices, attitudes, and knowledge. Genet Med. 2021
Feb;23(2):298-305
38. National Academies of Sciences, Engineering, and Medicine. 2018. Returning individual
research results to participants: Guidance for a new research paradigm. Washington,
DC: The National Academies Press
39. Molyneux S, Geissler PW. Ethics and the ethnography of medical research in Africa.
Soc Sci Med 2008;67:685-695
40. Ijsselmuiden CB, Kass NE, Sewankambo KN, Lavery JV. Evolving values in ethics and
global health research. Glob Public Health 2010;5:154-163
41. Lairumbi GM, Parker M, Fitzpatrick R, English MC. 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
42. Mfutso-Bengo J, Ndebele P, Masiye F. Disseminating research results to research
participants and their communities. Malawi Med J 2008;20:64-66
43. Geissler PW, Pool R. Editorial: Popular concerns about medical research projects in
sub-Saharan Africa - A critical voice in debates about medical research ethics. Trop
Med Int Heal. 2006;11(7):975–82
44. Kutalek R, Baingana F, Sevalie S, Broutet N, Thorson A (2020) Perceptions on the
collection of body fluids for research on persistence of Ebola virus: A qualitative study.
PLoS Negl Trop Dis 14(5)
45. Fairhead J, Leach M, Small M. Where techno-science meets poverty: medical research
and the economy of blood in The Gambia, West Africa. Soc Sci Med. 2006
Aug;63(4):1109-20
46. Gupta, C., & Kelly, A. B. (2014). The social relations of fieldwork: Giving back in a
research setting. J. Res. Pract., 10(2), 1–11
47. Baylor, C., Yorkston, K., Eadie, T., Kim, J., Chung, H., & Amtmann, D. (2013). The
Communicative Participation Item Bank (CPIB): Item Bank Calibration and Development
of a Disorder-Generic Short Form. J. Speech Lang. Hear. Res., 56(4), 1190–1208
48. Wolf SM, Paradise J, Caga-anan C. The law of incidental findings in human subjects
research: establishing researchers' duties. J Law Med Ethics. 2008 Summer;36(2):361-
83, 214
49. Millum J. How should the benefits of bioprospecting be shared? Hastings Cent Rep.
2010 Jan-Feb;40(1):24-33
50. Njue M, Kombe F, Mwalukore S, Molyneux S, Marsh V (2014) What Are Fair Study
Benefits in International Health Research? Consulting Community Members in Kenya.
PLoS ONE 9(12)
51. Stevenson A, Akena D, Stroud RE, Atwoli L, Campbell MM, Chibnik LB, et al.
Neuropsychiatric Genetics of African Populations-Psychosis (NeuroGAP-Psychosis): A
case-control study protocol and GWAS in Ethiopia, Kenya, South Africa and Uganda.
BMJ Open. 2019;9(2).
52. Dobbins M, DeCorby K, Twiddy T. A knowledge transfer strategy for public health
decision makers. Worldviews Evid Based Nurs 2004;1:120-128
53. Wilson, P. M., Petticrew, M., Calnan, M. W., & Nazareth, I. (2015). Does dissemination
extend beyond publication: a survey of a cross section of public funded research in the
UK. 1–8.
54. Tubaro P. Whose results are these anyway? Reciprocity and the ethics of “giving back”
after social network research. Soc Networks [Internet]. 2021;67:65–73.
55. Fedeli P, Casella C, Buccelli C, Cannovo N, Graziano V. Genetic Research: The Role of
Citizens, Public Health and International Stakeholders. Open Public Health J.
2019;12(1):106–13
56. NCST (2020). National Guidelines for Ethical Conduct of Biomedical Research Involving
Human Participants in Kenya. Second edition
57. Dauda B, Dierickx K. Benefit sharing: an exploration on the contextual discourse of a
changing concept. BMC Med Ethics. 2013 Sep 12;14:36
58. Singh S, Wassenaar D. Contextualising the role of the gatekeeper in social science
research. South African J Bioeth Law. 2016;9(1):42