Posts Tagged ‘South Africa’


“I passed the test!” Evidence of diagnostic misconception in the recruitment of population controls for an H3Africa genomic study in Cape Town, South Africa

Thursday, August 31st, 2017

Abstract:

Background

Advances in genetic and genomic research have introduced challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for an H3Africa genomic study on Rheumatic Heart Disease (RHDGen) at the University of Cape Town in South Africa. The main aim of the study was to understand ethical challenges in obtaining informed consent in the RHDGen study.

Methods

We used a qualitative study methodology involving in-depth interviews and participant observations. Our study participants were RHDGen cases (patients), healthy controls and research staff involved in the recruitment of RHDGen cases and controls. In total, we conducted 32 in-depth interviews with RHDGen cases and controls, 2 in-depth interviews with research staff and 57 direct observations of the consent procedures of RHDGen cases and controls. The interviews were conducted in English, audio-recorded and transcribed verbatim. Data were analyzed using thematic content analysis. The study was conducted in 3 sites within Cape Town, South Africa.

Results

Most healthy controls joined the RHDGen study in order to be screened for rheumatic heart disease (diagnostic misconception). A majority of RHDGen cases decided to join the RHDGen study because of therapeutic misconception.

Conclusion

The ethical challenges that impacted on obtaining informed consent in the RHDGen study were complex. In this study, the main challenges were diagnostic misconception among RHDGen controls and therapeutic misconception among RHDGen cases.

 

Masiye, Francis, Bongani Mayosi, and Jantina de Vries. ““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 (2017): 12.

Dr. Mantoa Mokhachane

Friday, February 25th, 2011

Dr. Mokhachane is a pediatrician and consultant for the Neonatal Unit at the Chris Hani Barahwanath Hospital, University of Witwatersrand in South Africa. She earned her Bachelor of Medicine and Surgery (MB.B.Ch), Fellow of the College of Medicine (FCP.Paed.SA), and MMed of Pediatrics at the University of Witwatersrand. Dr. Mokhachane’s interest in bioethics was sparked by the unfortunate situations that she has witnessed in her country, including various atrocities regarding human rights and ethical issues. The recognition of these issues motivated her to become a member of the National Medical Research Council Ethics Committee and the Ethics Committee of Research on Human Subjects at the University of the Witwatersrand. Her particular area of interest in research ethics is human rights and the idea of equality in a diverse community. She is interested in pursuing a study about informed consent in cross-cultural settings. Dr. Mokhachane is also interested in conducting research about orphans in a community where children are not legally adopted by the extended family.

To contact Mantoa Mokhachane, email: mokhachanem@medicine.wits.ac.za

Stakeholder Perspectives on Ethical Challenges in HIV Vaccine Trials in South Africa.

Monday, November 22nd, 2010

.

Access to Treatment in HIV Prevention Trials: Perspectives from a South African Community.

Monday, November 22nd, 2010

.

Stakeholder perspectives on ethical challenges in HIV vaccine trials in South Africa

Wednesday, September 8th, 2010

.

What should South African HIV vaccine trials do about social harms?

Wednesday, September 8th, 2010

.

Ms. Nicola W. Barsdorf

Saturday, July 12th, 2003

Ms. Barsdorf is a Ph.D. candidate in the Centre for International Health, University of Bergen, Norway. She is a former fellow in the Department of Bioethics at the National Institutes of Health, USA. She holds an MHS in International health from Johns Hopkins Bloomberg School of Public Health and a Bachelors degree in Psychology and Sociology. Ms. Barsdorf’s research interests include global health research ethics, with a focus on ethical issues in HIV prevention research, and global justice. She is currently based in Cape Town and works as a consultant for the HIV AIDS Vaccines Ethics Group (HAVEG).

nicolabarsdorf@gmail.com

.