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Consent in genomics research in sub-Saharan Africa

Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia

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Pages 184-199 | Received 09 Apr 2018, Accepted 06 Mar 2019, Published online: 24 Mar 2019

References

  • Carapetis, J. R., Steer, A. C., Mulholland, E. K., & Weber, M. (2005). The global burden of group A streptococcal disease. The Lancet Infectious Diseases, 5, 685–694. doi: 10.1016/S1473-3099(05)70267-X
  • Carapetis, J. R., & Zuhlke, L. J. (2011). Global research priorities in rheumatic fever and rheumatic heart disease. Annals of Pediatric Cardiology, 4(1), 4–12. doi: 10.4103/0974-2069.79616
  • Chanda-Kapata, P., Kapata, N., Moraes, A. N., Chongwe, G., & Munthali, J. (2015). Genomic research in Zambia: Confronting the ethics, policy and regulatory frontiers in the 21st century. Health Research Policy and Systems, 13, 60. doi: 10.1186/s12961-015-0053-4
  • De Vries, J., Bull, S., Doumbo, O. K., Ibrahim, M., Mercerau-Puijalon, O., Kwiatkowski, D. P., & Parker, M. (2011). Ethical issues in human genomics research in developing countries. BMC Medical Ethics, 12, 5. doi: 10.1186/1472-6939-12-5
  • de Vries, J., Munung, S. N., Matimba, A., McCurdy, S., Ouwe Missi Oukem-Boyer, O., Staunton, C., … Tindana, P. (2017). Regulation of genomic and biobanking research in Africa: A content analysis of ethics guidelines, policies and procedures from 22 African countries. BMC Medical Ethics, 18(1), 8. doi: 10.1186/s12910-016-0165-6
  • Engel, M., Stander, R., Vogel, J., Adeyemo, A. A., & Mayosi, B. M. (2011). Genetic susceptibility to acute rheumatic fever: A systematic review and meta-analysis of twin studies. PLoS ONE, 6(9), e25326. doi: 10.1371/journal.pone.0025326
  • 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
  • Grady, C., Eckstein, L., Berkman, B. E., Brock, D., Cook-Deegan, R., Fullerton, S. M., … Wendler, D. (2015). Broad consent for research with biological samples: Workshop conclusions. The American Journal of Bioethics, 15(9), 34–42. doi: 10.1080/15265161.2015.1062162
  • H3Africa Consortium. (2014). Research capacity. Enabling the genomic revolution in Africa. Science (New York, N.Y.), 344(6190), 1346–1348. doi: 10.1126/science.1251546
  • Hofmann, B. (2009). Broadening consent - and diluting ethics? Journal of Medical Ethics, 35, 125–129. doi: 10.1136/jme.2008.024851
  • Jao, I., Kombe, F., Mwalukore, S., Bull, S., Parker, M., Kamuya, D., … Marsh, V. (2015). Involving research stakeholders in developing policy on sharing public health research data in Kenya: Views on fair process for informed consent, access oversight, and community engagement. Journal of Empirical Research on Human Research Ethics, 10(3), 264–277. doi: 10.1177/1556264615592385
  • Karthikeyan, G., Zuhlke, L., Engel, M., Rangarajan, S., Yusuf, S., Teo, K., & Mayosi, B. M. (2012). Rationale and design of a Global Rheumatic heart disease Registry: The REMEDY study. American Heart Journal, 163(4), 535–540.e531. doi: 10.1016/j.ahj.2012.01.003
  • Marshall, P., Adebamowo, C., Adeyemo, A., Ogundiran, T., Strenski, T., Zhou, J., & Rotimi, C. (2014). Voluntary participation and comprehension of informed consent in a genetic epidemiological study of breast cancer in Nigeria. BMC Medical Ethics, 15(1), 38. doi: 10.1186/1472-6939-15-38
  • Masiye, F., Mayosi, B., & de Vries, J. (2017). “I passed the test!” Evidence of diagnostic misconception in the recruitment of population controls for an H3Africa genomic study in Cape Town, South Africa. BMC Medical Ethics, 18(1), 12. doi: 10.1186/s12910-017-0175-z
  • Munung, N. S., Marshall, P., Campbell, M., Littler, K., Masiye, F., Ouwe-Missi-Oukem-Boyer, O., … de Vries, J. (2016). Obtaining informed consent for genomics research in Africa: Analysis of H3Africa consent documents. Journal of Medical Ethics, 42(2), 132–137. doi: 10.1136/medethics-2015-102796
  • Parkinson, S., Eatough, V., Holmes, J., Stapley, E., & Midgley, N. (2016). Framework analysis: A worked example of a study exploring young people’s experiences of depression. Qualitative Research in Psychology, 13(2), 109–129. doi: 10.1080/14780887.2015.1119228
  • Peprah, E., Xu, H., Tekola-Ayele, F., & Royal, C. D. (2015). Genome-wide association studies in Africans and African Americans: Expanding the framework of the genomics of human traits and disease. Public Health Genomics, 18(1), 40–51. doi: 10.1159/000367962
  • QSR International Pty Ltd. (2015). NVivo Pro Version 11.
  • Sheehan, M. (2011). Broad consent is informed consent. BMJ, 343, d6900–d6900. doi: 10.1136/bmj.d6900
  • 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
  • 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(1), 15. doi: 10.1186/1472-6939-13-15
  • Tindana, P., & De Vries, J. (2016). Broad consent for genomic research and biobanking: Perspectives from low- and middle-income countries. Annual Review of Genomics and Human Genetics, 17, 375–393. doi: 10.1146/annurev-genom-083115-022456
  • van Schalkwyk, G., de Vries, J., & Moodley, K. (2012). It’s for a good cause, isn’t it? – Exploring views of South African TB research participants on sample storage and re-use. BMC Medical Ethics, 13, 19. doi: 10.1186/1472-6939-13-19
  • Watkins, D. A., Johnson, C. O., Colquhoun, S. M., Karthikeyan, G., Beaton, A., Bukhman, G., … Mensah, G. A. (2017). Global, regional, and national burden of rheumatic heart disease, 1990–2015. New England Journal of Medicine, 377(8), 713–722. doi: 10.1056/NEJMoa1603693
  • Wonkam, A., & Mayosi, B. M. (2014). Genomic medicine in Africa: Promise, problems and prospects. Genome Medicine, 6(2), 11. doi: 10.1186/gm528
  • 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, 21. doi: 10.1186/1472-6939-14-21
  • Zühlke, L., Karthikeyan, G., Engel, M. E., Rangarajan, S., Mackie, P., Mauff, B. C.-K., … Ogendo, S. (2016). Clinical outcomes in 3343 children and adults with rheumatic heart disease from 14 low- and middle-income countries. Circulation, 134(19), 1456–1466. doi: 10.1161/CIRCULATIONAHA.116.024769