Abstract
The law and literature field of study, which is still being developed in South Africa, is an interdisciplinary field of study that offers readers of fiction an opportunity to reflect critically on the role and function of law in a broader context, including the possibility to evaluate, within a defined scope, complex social and legal issues such as lawlessness, discrimination and injustice. This field of study furthermore creates the ideal lens for a critical review of social, legal and cultural practices influenced by the law.
Zelda Bezuidenhout’s 2021 novel Die waarde van stil bure portrays unconventional conduct that confronts the legal order. Despite the characters’ unlawful behaviour, the reader sympathises with transgressors because of their equally justifiable and legitimate motives that inform their conduct. Stem cell research is a novel and yet unexplored topic in Afrikaans literature. Fiction is a very effective medium to promote social awareness regarding this topic, ultimately encouraging social interest and participation regarding the regulation of new biomedical technologies, such as stem cell research and therapy, genomic research and gene editing.
The plot of the novel revolves around the lives of three girls who grew up together –white identical twins, Magdaleen and Misha, and Puleng, the daughter of the twins’ domestic worker. The domestic worker, Evalyn, and the mother of the twins, Alida, were close to each other, almost like sisters. When Misha dies unexpectedly, the grieving Magdaleen remains behind alone. She rents a semi house in Melville and meets her unconventional neighbour, Darius, who conducts stem cell research in his home. Magdaleen, whose best friend’s son is unable to walk due to an accident, asks the neighbour whether he could perform a stem cell transplant on the boy in the hope that the boy may be able to walk again. With the assistance of Darius, she gets the right medical team together, who all agree to keep their participation in the illegal operation confidential. Magdaleen’s king pin in this group is the domestic worker’s daughter, Puleng, who has since become a medical doctor. The stem cell transplant that is subsequently performed, is a huge success. However, shortly thereafter, Darius is murdered. She suspects that a big pharmaceutical company who opposes stem cell research is responsible for his death. Before he died, Darius had explained to her that some pharmaceutical companies do not support stem cell research, as stem cell transplants would undermine the profit that they would make from ordinary conventional medicines for the treatment of cancer. The novel’s turning point is when Magdaleen discovers that Puleng is responsible for the neighbour’s murder as a result of deeply hidden grudges that she has been carrying for many years. Puleng explains she was never happy with the unequal relationship between black and white people during apartheid. When it became clear that the stem cell transplant was a success, Puleng felt that this success should be hers alone.
The novel touches on the legality and the ethical justification of unauthorised stem cell research and transplant, and also refers to the social milieu during apartheid that shaped the girls’ behaviour over time. Darius appears to be involved with unlawful human stem cell research. His explanation that the research ethics committee of the Medical Research Council is aware of his research, is factually flawed and is either a blatant lie or ignorance on the side of Darius, or may point to the author’s own ignorance as to the legal requirements in terms of the National Health Act. As an agricultural economist, Darius is completely unqualified to conduct research or experimentation using human stem cells. The National Health Act contains strict requirements and conditions for the removal, use and processing of human tissue, blood and gametes (required for stem cell research), which may be performed only by authorised persons in legally authorised or prescribed institutions (sections 54, 55 and 56 of the Act). The regulations relating to the use of human biological material, published in terms of Government Notice R177 in the Government Gazette of 2 March 2012), promulgated in accordance with section 68 of the National Health Act, describe in regulation 1(g) and 1(h) a “competent person” who may remove foetal tissue and umbilical cord blood as a medical practitioner registered in terms of the Health Professions Act 56 of 1974 with the Health Professions Council of South Africa, or a “competent person” conducting health research as a person registered as a medical technologist or scientist in terms of the Health Professions Act with the Health Professions Council of South Africa. The same regulations stipulate that no person, except a competent person, may remove human biological material for genetic testing, health research or for therapeutic purposes (reg. 2). Human biological material may be removed in an authorised or prescribed institution only and with the relevant written informed consent of the person whose material is removed (reg. 3). This requirement applies also to the use of adult, embryonic, umbilical cord and foetal stem cells for the purpose of stem cell therapy (reg. 9).
In contrast to the National Health Act, which requires ministerial consent for the removal and use of stem cells (sects. 56(2)(a)(iv), 57(3) and 57(4) of the act), the regulations relating to the use of human biological material require only the informed consent of the person whose stem cells or tissue are removed (reg. 9). The regulations also provide for stricter penalties following a contravention of any of the regulations than those laid down in the National Health Act in chapter 8 for similar contraventions, notably ten years’ imprisonment or a fine or both, in contrast with the Health Act’s reference to five years’ imprisonment or a fine or both (sect. 57(5) of the Health Act).
The unlawfulness of Darius’s stem cell research is the result of multiple transgressions: His research lacks the necessary ethical oversight, and he is unqualified to pursue stem cell research, let alone participate in the therapeutic stem cell transplant that is performed on the young boy. The importance of research ethics committees in the context of stem cell research cannot be emphasised enough. Ethics committees ensure compliance with relevant ethical standards and norms for health research and protect research participants during this process, also where participants may have religious, cultural or social objections to the use of their tissue, stem cells, embryos and foetuses in research. The actual stem cell transplant that is performed in the novel could arguably also be considered a stem cell-based therapy that may need to comply with the requirements and guidelines on good manufacturing practice for biological medicines, monitored by the Biological Medicines Evaluation and Research Unit of the South African Health Products Regulatory Authority (SAHPRA). To date, an effective legal framework for the regulation of stem cell therapies has not been put in place in South Africa. The lack of oversight over these procedures, including the negative consequences that may result from this, are clearly depicted in Die waarde van stil bure.
In the final instance, the novel’s juxtapositioning of apartheid as a crime against humanity (authorised and institutionalised by law and religion at the time), whose forces have shaped the characters in this novel in different ways, as well as the illegality yet morally justifiability of the stem cell research and transplant in the novel, conveys a strong message to the reader that the distinction between right and wrong is not always a clear binary one. Whilst everything on the surface appeared happy and well with the “Liquorice Allsorts family”, the opposite was in fact true.
Keywords: apartheid; apartheid wrongs; law and literature; law and morality; stem cell research; stem cell transplant
- The featured image of this article is a combination of the book cover of Die waarde van stil bure (Kwela, 2021) and an image of embryonic stem cells, Wikimedia Commons (Nissim Benvenisty, CC BY 2.5) in accordance with the Creative Commons licence agreement.