2020 statistics published by the Organ Donor Foundation indicated 4300 individuals on the South African organ transplant waiting list. Combined with this, the diagnoses of non-communicable diseases which can lead to organ failure (Diabetes Mellitus, kidney disease, hypertension, liver disease, heart disease, etc.) continue to rise.
It is with this in mind that 27-year-old Terry Adams tackles her current doctoral studies at Nelson Mandela University. She investigates the often-controversial topic of organ donation and explores the possible reasons for the remarkably low rate of organ donation in South Africa, from a Roman Catholic perspective.
“The study questions if parishioners ever considered organ donation; whether it is a taboo subject; how faith and doctrine may affect their health choices; and how the sacredness of the body plays a role within the Catholic belief system”, Terry explains. It also investigates whether other socio-economic, demographic, or cultural factors exist that may influence parishioners’ acceptance or rejection of organ donation.
Apart from ethnographic elements, several health, administrative, and judicial factors dictate whether an individual can or will receive an organ transplant in South Africa.
Organ donors need to be a very close genetic match to the recipient otherwise the risk of a blood transfusion reaction or transplant rejection is a strong possibility.
The extensive waiting list, and the Department of Health’s ethics approval, which is required for each individual case, further complicate the process. Transplant Specialists must be available to perform surgeries, and currently, transplant units are only available in certain hospitals and provinces.
In addition, South African Common Law dictates that an organ donor, as well as their family, must agree to the procedure otherwise a perfectly viable organ transplant can be prevented if the family refuses for personal or religious reasons. Even if the donor is brain dead, some argue that it is not death. Brain death must also be determined and confirmed by three doctors other than the transplant team.
Unfortunately, current data on registered organ donors are general and do not specify demographic information related to religion, race, economic status, or cultural orientation. It is therefore a challenging task to draw conclusions about organ donor trends in specific religions, races, cultural groups, etc.
According to Terry’s preliminary investigation, many Christian denominations, although not all, have come to accept regenerative medicines such as stem cell treatments, blood donation, and organ donation. Organ donation or transplants are permitted if it is beneficial and brings no harm to the donor or the recipient, and if it is intended to improve health and not modify the body. The Catholic Church encourages organ donation as an act of brotherly love however, it is not something you are obliged to do. Individual skepticism brought on by the parallels of life and death must be considered.
Being a multi-ethnic nation with many cultures, sub-cultures, and religious orientations, South Africa faces the complexity of varying opinions on this subject. It further influences individuals’ health behaviors and in turn impacts organ donation and transplant rates.
Terry’s research is not just a means to a postgraduate qualification or gathering more scientific data on the subject, but rather a path to facilitate more conversations and education in this field. She believes that more can be done within society to accurately inform individuals about organ donation and clarify misunderstandings or misconceptions about organ donation from a social, economic, and cultural perspective.
It does not set out to influence individuals to become organ donors but rather attempts to understand people’s life choices and recognize that individual experiences and understanding of such issues differ. Also, that beliefs and traditions can adapt over time.
As she bravely tells her own story, one of a 19-year-old girl with a rare kidney ailment, attempting to find answers to questions about her own faith and how it may influence her options, opportunities, and decisions if she needed a kidney transplant in the future, her research journey expands to explore the thoughts and considerations of others.
“I would like people to feel empowered enough to come forward with their stories and raise their questions on the topic,” Terry said. “I believe that my research can be used as a conversation starter and I would be readily available to sit and have conversations with individuals related to my work and my journey, and to pose questions based on my research findings”.
