Ethics & Engagement across the Wellcome Trust Major Overseas Programmes

the Altruistic nature of Tuberculomas in Durban, South Africa

I am nearing the end of this project, with just the write up left to complete. To briefly summarize, in establishing partnerships with the Department of Cardio thoracic surgery,  we have incorporated the researcher into the doctor-patient relationship and were interested in studying the various aspects surrounding the consent for both therapeutic surgical procedures, as well as consent from patients for human tissue collection, exploratory basic science research as well as tissue storage. The informed consent process is an essential tool to facilitate the surgical treatment of disease.  Traditionally, this interaction occurs between the surgeon and patient, with the expected outcomes, surgical complications and alternatives to surgery discussed.  When this process occurs in conjunction with consent for basic science research that utilizes the excised surgical tissue, the potential exists for angst on the part of the patient and suspicion regarding the true motives of either intervention. This now sets the scene for a complex patient-doctor-researcher interaction which may compromise the ethical principles of autonomy, beneficence and maleficence.

This has led us to investigate health practitioners concerns at both hospitals, around the impact of the consent process for (a) surgical procedures, (b) recruiting patients who are awaiting surgical procedures into clinical research studies and (c) factors surrounding the recruitment process that may influence a patient’s decision to participate in either option.

The results obtained suggest some common themes of language barriers, lack of and poor communication, poor understanding, standardization and altruism. Through the analysis some interesting feedback was provided to open ended questions, such as 'patients are not involved in the consent', 'the consent form should be available in national languages', 'health care workers obtaining the consent should learn the language' 

Currently, I am still teasing out the themes of the research project and aim to have a written draft available in the upcoming weeks. 

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Comment by Dina Rippon on March 17, 2020 at 10:51

Dear Khadija, thank you so much for this update! Consent is such a key issue, and so many of our units are working on various aspects of the consent process. It's really good to hear about the work you've done, and the results you found. I'm especially interested in your last point - the fact that those obtaining the consent should learn the language. I look forward to seeing your article on this, and am sure that many of our GHBN members at the other units would be interested in this too. Well done!

Comment by Busisiwe Nkosi on April 23, 2020 at 19:45

'patients are not involved in the consent', 'the consent form should be available in national languages', 'health care workers obtaining the consent should learn the language' Hi Khadija, interesting findings. Will be watching the space.

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