Skip to main content
Log in

Roles of Genetic Counselors in South Africa

  • Genetic Counseling: A Global Perspective
  • Published:
Journal of Genetic Counseling

Abstract

Genetic counseling is a growing health profession in South Africa. Training (set up in 1988) and registration are in place, but job creation remains challenging. The aim of the present study was to investigate the roles played by genetic counselors in the provision of genetic services, in South Africa. A questionnaire comprising items on the types of roles they performed was constructed and counselors were asked to make the log-books, in which they recorded their daily counseling activities, available. A check list was drawn up so that relevant information could be collected systematically from these log-books. Then departmental statistics were accessed from the two universities providing genetic services and genetic counselor training. Structured interviews were conducted with the genetic counselors (16 of 23 participated), and data were collected from their completed questionnaires, log-books and the departmental statistics, for the years 2007 and 2008. These data were analyzed and the findings showed that the counselors counseled about one third (39 %) of all the cases seen at genetic clinics per annum, and the total numbers were increasing. They counseled for 57 different genetic disorders, and their clients represented the range of local ethnic groups. They also had educational, research, marketing and administrative roles. They expected to expand these roles and advance the profession in future. Genetic counselors are versatile, playing several significant roles. As these become better recognized, demand for their services should increase, jobs should be created and the service expanded.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Aalfs, C. M., Oort, F. J., De Haes, J. C. J. M., Leschot, N. J., & Smets, E. M. A. (2007). A comparison of counselee and counselor satisfaction in reproductive genetic counseling. Clinical Genetics, 72, 74–82.

    Article  PubMed  CAS  Google Scholar 

  • Bee, J. (2005). The influence of HIV status on women of advanced maternal age presenting for genetic counselling. MSc research report. University of the Witwatersrand, Johannesburg.

  • Biesecker, B., & Peters, K. (2001). Process studies in genetic counseling: peering into the black box. American Journal of Medical Genetics, 106, 191–198.

    Article  PubMed  CAS  Google Scholar 

  • Coovadia, H., Jewkes, R., Barron, P., Sanders, D., & McIntyre, D. (2009). Health in South Africa. Part one: the health and health systems of South Africa: historical roots of current public health challenges. Lancet, 374, 817–834.

    Article  PubMed  Google Scholar 

  • Department of Health, South Africa. (2001). Policy guidelines for the management and prevention of genetic disorders, birth defects and disabilities. Pretoria: Department of Health.

    Google Scholar 

  • Harper, P. S. (2004). Practical genetic counselling (6th ed.). Oxford: Butterworth-Heinemann.

    Google Scholar 

  • Jenkins, T. (1990). Medical genetics in South Africa. Journal of Medical Genetics, 27, 760–779.

    Article  PubMed  CAS  Google Scholar 

  • Kessler, S. (1997). Psychological aspects of genetic counseling. IX. Teaching and counseling. Journal of Genetic Counseling, 6, 287–295.

    Article  Google Scholar 

  • Kromberg, J. G. R. (1986). A genetic and psychosocial study of albinism in Southern Africa. PhD thesis. University of the Witwatersrand, Johannesburg.

  • Kromberg, J. G. R., & Berkowitz, D. (1986). Managing genetic disorders. South African Family Practice, September, 279–285.

  • Kromberg, J. G. R., & Jenkins, T. (1982). Albinism in the Southern African Negro. II. Prevalence. South African Medical Journal, 61, 383–386.

    PubMed  CAS  Google Scholar 

  • Kromberg, J., & Jenkins, T. (1997). Cultural influences on the perception of genetic disorders in the black population of Southern Africa. In A. Clarke & E. Parsons (Eds.), Culture kinship and genes (pp. 147–157). London: Macmillan.

    Google Scholar 

  • Kromberg, J. G. R., Bernstein, R., Jacobson, M., Rosendorff, R., & Jenkins, T. (1989). A decade of mid-trimester amniocentesis in Johannesburg: prenatal diagnosis, problems and counseling. South African Medical Journal, 76, 344–349.

    PubMed  CAS  Google Scholar 

  • Kromberg, J. G. R., Parkes, J., & Taylor, S. (2006). Genetic counselling as a developing health care profession: a case study in the Queensland context. Australian Journal of Primary Health, 12, 5–12.

    Article  Google Scholar 

  • Kromberg, J. G. R., Sizer, E., & Christianson, A. L. (2012). Genetic services and testing in South Africa. Journal of Community Genetics. doi:10.1007/s12678-012-0101-5.

    PubMed  Google Scholar 

  • Labrum, R., Rodda, J., & Krause, A. (2007). The molecular basis of Spinal Muscular Atrophy (SMA) in South African Black patients. Neuromuscular Disorders, 17, 684–692.

    Article  PubMed  CAS  Google Scholar 

  • Levy, B. (1992). Expectations of genetic counselling. MSc dissertation, University of the Witwatersrand, Johannesburg.

  • Macaulay, S., Gregersen, N., & Krause, A. (2012). Uptake of genetic counseling services by patients with cystic fibrosis and their families. South African Family Practice, 54, 250–255.

    Google Scholar 

  • Magasi, D. S., Krause, A., Bonev, V., Moagi, M., Iqbal, Z., Dludla, M., et al. (2008). Huntington’s disease: genetic heterogeneity in black African patients. South African Medical Journal, 98, 200–203.

    Google Scholar 

  • McAllister, M., Payne, K., MacLeod, R., Nicholls, S., Donnai, D., & Davies, L. (2008). What process attributes of clinical genetic services could maximize patient benefits. European Journal of Human Genetics, 16, 1467–1476.

    Article  PubMed  Google Scholar 

  • McCarthy Veach, P., LeRoy, B. S., & Bartels, D. M. (2003). Facilitating the genetic counseling process. New York: Springer.

    Google Scholar 

  • Morgan, N. V., Essop, F., Demuth, I., de Ravel, T., Jansen, S., Tischkowitz, M., et al. (2005). A common Fanconi anemia mutation in black populations of sub-Saharan Africa. Blood, 105, 3542–3544.

    Article  PubMed  CAS  Google Scholar 

  • National Society of Genetic Counselors. (2010). 2010 professional status survey: Executive summary. Available at www.nsgc.org.

  • Sayed, A.-R., Bourne, D., Pattinson, R., Nixon, J., & Henderson, B. (2008). Decline in the prevalence of neural tube defects following folic acid fortification and its cost-benefit in South Africa. Birth Defects Research (Part A), 82, 211–216.

    Article  CAS  Google Scholar 

  • Skirton, H., Cordier, C., Lambert, D., Ugander, U. H., Voelckel, M.-A., & O’Connor, A. (2013). A study of the practice of individual genetic counselors and genetic nurses in Europe. Journal of Community Genetics, 4, 69–75.

    Article  PubMed  Google Scholar 

  • Smith, C. P. (2000). Content analysis and narrative analysis. In H. T. Reis & C. M. Judd (Eds.), Handbook of research methods in social and personality psychology (pp. 313–335). New York: Cambridge University Press.

    Google Scholar 

  • Statistics South Africa. (2009). Mid-year population estimates. Mortality, expectation of life at birth, and fertility. pp 6–7. Available at http://www.statssa.gov.za/publications/PO302/PO3022009.pdf.

  • Statistics South Africa. (2011). Available at http://www.statssa.gov.za.

  • Todd, C., Haw, T., Kromberg, J. G. R., & Christianson, A. L. (2010). Genetic counseling for fetal abnormalities in a South African community. Journal of Genetic Counseling, 19, 247–254.

    Article  PubMed  Google Scholar 

  • Turnbull, M., Wiggins, J. L., Lees, M., & Chitty, L. (2007). Dedicated primary care genetic counselors: effect on uptake of genetic services. Journal of Medical Genetics, 44(Suppl 1), 16.

    Google Scholar 

  • Van der Merwe, N. C., Hamel, N., Schneider, S.-R., Apffellstaedt, J. P., Wijnen, J. T., & Foulkes, W. D. (2012). A founder BRCA2 mutation in non-Afrikaner breast cancer cases of the Western Cape of South Africa. Clinical Genetics, 81, 179–184.

    Article  PubMed  Google Scholar 

  • Van Wyk, C. (2008). The practices, knowledge and attitudes about common hereditary cancers: Survey of general practitioners in Johannesburg. MSc research report. University of the Witwatersrand, Johannesburg.

  • Weil, J. (2000). Psychosocial genetic counseling. Oxford: Oxford University Press.

    Google Scholar 

  • World Bank. (2010). Country classification table. Available at http://data.worldbank.org/country/south-africa.

Download references

Acknowledgments

The genetic counselors who gave up their time to participate in this study, Dr M Urban who provided statistics on the genetic services at UCT, and the Mellon Foundation for funding JGRK’s post at the University of the Witwatersrand, are acknowledged.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Jennifer G. R. Kromberg.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Kromberg, J.G.R., Wessels, TM. & Krause, A. Roles of Genetic Counselors in South Africa. J Genet Counsel 22, 753–761 (2013). https://doi.org/10.1007/s10897-013-9606-2

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10897-013-9606-2

Keywords

Navigation