2,721
Views
12
CrossRef citations to date
0
Altmetric
Consent in genomics research in sub-Saharan Africa

What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda

, , , ORCID Icon, & ORCID Icon
Pages 169-183 | Received 27 Nov 2017, Accepted 06 Mar 2019, Published online: 24 Mar 2019

References

  • Ahmed, S. M., & Palermo, A.-G. S. (2010). Community engagement in research: Frameworks for education and peer review. American Journal of Public Health, 100(8), 1380–1387. doi: 10.2105/AJPH.2009.178137
  • Boutin-Foster, C., Phillips, E., Palermo, A.-G., Boyer, A., Fortin, P., Rashid, T., … Love, G. (2008). The role of community-academic partnerships: Implications for medical education, research, and patient care. Progress in Community Health Partnerships: Research, Education and Action, 2(1), 55–60. doi: 10.1353/cpr.2008.0006
  • Bredenoord, A. L., Kroes, H. Y., Cuppen, E., Parker, M., & van Delden, J. J. (2011). Disclosure of individual genetic data to research participants: The debate reconsidered. Trends in Genetics, 27(2), 41–47. doi: 10.1016/j.tig.2010.11.004
  • Bredenoord, A. L., Onland-Moret, N. C., & Van Delden, J. J. (2011). Feedback of individual genetic results to research participants: In favour of a qualified disclosure policy. Human Mutation, 32(8), 861–867. doi: 10.1002/humu.21518
  • Cambon-Thomsen, A., Rial-Sebbag, E., & Knoppers, B. (2007). Trends in ethical and legal frameworks for the use of human biobanks. European Respiratory Journal, 30, 373–382. doi: 10.1183/09031936.00165006
  • Carrieri, D., Bewshea, C., Walker, G., Ahmad, T., Bowen, W., Hall, A., & Kelly, S. (2016). Ethical issues and best practice in clinically based genomic research: Exeter stakeholders meeting report. Journal of Medical Ethics, Medethics, 42(11), 695–697. doi: 10.1136/medethics-2016-103530
  • Department of Health and Human Services, U. S. (1979). The Belmont Report. Retrieved from https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html#xbenefit.
  • de Vries, J., Bull, S., Doumbo, O., Ibrahim, M., Mercereau-Puijalon, O., Kwiatkowski, D., & Michael, P. (2011). Ethical issues in human genomics research in developing countries. BMC Medical Ethics, 12(1), 5. doi: 10.1186/1472-6939-12-5
  • Emerson, C., Singer, P. A., & Upshur, R. E. G. (2011). Access and use of human tissues from the developing world: Ethical challenges and a way forward using a tissue trust. BMC Medical Ethics, 12, 2. doi: 10.1186/1472-6939-12-2
  • Gale, N. K., Heath, G., Cameron, E., Rashid, S., & Redwood, S. (2013). Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Medical Research Methodology, 13(1), 1–8. doi: 10.1186/1471-2288-13-117
  • Johnson, K. J., & Gehlert, S. (2014). Return of results from genomic sequencing: A policy discussion of secondary findings for cancer predisposition. Journal of Cancer Policy, 2(3), 75–80. doi: 10.1016/j.jcpo.2014.05.001
  • Kaye, J., Whitley, E. A., Lund, D., Morrison, M., Teare, H., & Melham, K. (2015). Dynamic consent: A patient interface for twenty-first century research networks. European Journal of Human Genetics, 23(2), 141–146. doi: 10.1038/ejhg.2014.71
  • Marsh, V., Kombe, F., Fitzpatrick, R., Williams, T. N., Parker, M., & Molyneux, S. (2013). Consulting communities on feedback of genetic findings in international health research: Sharing sickle cell disease and carrier information in coastal Kenya. BMC Medical Ethics, 14(1), 41. doi: 10.1186/1472-6939-14-41
  • McGuire, A. L., Hamilton, J. A., Lunstroth, R., McCullough, L. B., & Goldman, A. (2008). DNA data sharing: Research participants’ perspectives. Genetics in Medicine, 10(1), 46. doi: 10.1097/GIM.0b013e31815f1e00
  • Munung, N. S., Marshall, P., Campbell, M., Littler, K., Masiye, F., Ouwe-Missi-Oukem-Boyer, O., & De Vries, J. (2015). Obtaining informed consent for genomics research in Africa: Analysis of H3Africa consent documents. Journal of Medical Ethics, doi:10.1136/medethics-2015-102796.
  • Nyika, A. (2009). Ethical and practical challenges surrounding genetic and genomic research in developing countries. Acta Tropica, 112(Suppl 1), S21–S31. doi: 10.1016/j.actatropica.2009.07.034
  • Robinson, J. O., Slashinski, M. J., Wang, T., Hilsenbeck, S. G., & McGuire, A. L. (2013). Participants’ recall and understanding of genomic research and large-scale data sharing. Journal of Empirical Research on Human Research Ethics, 8(4), 42–52. doi: 10.1525/jer.2013.8.4.42
  • Smith, J., & Firth, J. (2011). Qualitative data analysis: The framework approach. Nurse Researcher, 18(2), 52–62. doi: 10.7748/nr2011.01.18.2.52.c8284
  • Stein, D. T., & Terry, S. F. (2013). Reforming biobank consent policy: A necessary move away from broad consent toward dynamic consent. Genetic Testing and Molecular Biomarkers, 17(12), 855–856. doi: 10.1089/gtmb.2013.1550
  • Tekola, F., Bull, S. J., Farsides, B., Newport, M. J., Adeyemo, A., Rotimi, C. N., & Davey, G. (2009). Tailoring consent to context: Designing an appropriate consent process for a biomedical study in a low income setting. PLoS Neglected Tropical Diseases, 3(7), e482. doi: 10.1371/journal.pntd.0000482
  • Tindana, P., Bull, S., Amenga-Etego, L., de Vries, J., Aborigo, R., Koram, K., & Parker, M. (2012). Seeking consent to genetic and genomic research in a rural Ghanaian setting: A qualitative study of the MalariaGEN experience. BMC Medical Ethics, 13, 15. doi: 10.1186/1472-6939-13-15
  • Tindana, P., de Vries, J., Campbell, M., Littler, K., Seeley, J., Marshall, P., & Parker, M. (2015). Community engagement strategies for genomic studies in Africa: A review of the literature. BMC Medical Ethics, 16(1), 24. doi: 10.1186/s12910-015-0014-z
  • Traore, K., Bull, S., Niare, A., Konate, S., Thera, M. A., Kwiatkowski, D., & Doumbo, O. K. (2015). Understandings of genomic research in developing countries: A qualitative study of the views of MalariaGEN participants in Mali. BMC Medical Ethics, 16(1), 42. doi: 10.1186/s12910-015-0035-7
  • Upshur, R. E., Lavery, J. V., & Tindana, P. (2007). Taking Tissue seriously means taking communities seriously. BMC Medical Ethics, 26, 8–11.
  • Wonkam, A., Kenfack, M. A., Muna, W. F., & Ouwe-Missi-Oukem-Boyer, O. (2011). Ethics of human genetic studies in sub-Saharan Africa: The case of Cameroon through a bibliometric analysis. Developing World Bioethics, 11(3), 120–127. doi: 10.1111/j.1471-8847.2011.00305.x
  • Wright, G. E., Koornhof, P. G., Adeyemo, A. A., & Tiffin, N. (2013). Ethical and legal implications of whole genome and whole exome sequencing in African populations. BMC Medical Ethics, 14(1), 21. doi: 10.1186/1472-6939-14-21