By Benjamin Ferguson, Golden Mwinsa, Kasoka Kasoka, and Frances Griffiths
UNAIDS 2023 figures estimate the incidence of HIV/AIDS in Zambia at 9.8%, one of the highest rates in the world. However, the country has made significant progress, halving infections over the past 25 years. Zambia now meets two of UNAIDS three 95% goals: 98% of Zambians diagnosed with HIV/AIDS are on ART medications and 96% of those on medications have achieved viral load remissions. The introduction of ARTs and public health initiatives involving education and contact tracing have been major drivers in these successes.
The third goal—that 95% of those living with HIV/AIDS are aware of their status is within reach. Current estimates place this figure at 89%. Zambia’s Universal Routine HIV Testing Services Policy, introduced in 2017 may help meet this remaining target.
The policy mandates the provision of HIV testing services to all individuals seeking health services at health facilities and community outreach events. Controversially, it also makes testing mandatory for high-risk and vulnerable groups. The policy is equivocal about whether testing is indeed required. Though it notes that patients may opt-out, it also clearly states that health practitioners must test high risk groups.
Regardless of how the policy is framed, fieldwork conducted with community health workers has shown that in practice, Zambian HIV testing does not meet standard requirements for informed consent. Patients are repeatedly pressured to test and, in some cases, are denied care if they refuse. Some patients are tested without authorisation.
Informed consent is the core principle of Western bioethics. Modern legal support dates to the adoption of the Nuremberg Code in 1947, but its philosophical roots can be traced to the emphasis that Kant, Locke, Rousseau, and other enlightenment thinkers placed on autonomy and self-governance. If one takes the standard perspective that informed consent is necessary for morally permissible clinical intervention, then the Zambian HIV testing practice represents a violation a central bioethical commitment.
However, when put to scrutiny this verdict appears to involve some moral hypocrisy. Strict adherence to informed consent principles is frequently violated in Western practice as well. Most conspicuous, of course, are the legal requirements surrounding testing and vaccination enacted by many countries during the COVID pandemic. The ability to travel and enter public spaces was conditional on submitting to testing and vaccination. A few countries also mandated vaccination. These measures exerted significant pressure on patients to undergo treatments, which undermined the informed consent requirement that authorisation not be pressured or coerced.
Though COVID represents the most significant suspension of informed consent in Western contexts, there are other examples. Other diseases—most notably tuberculosis—can require quarantine. Recently, in Washington state, a judge issued an order giving the county health department the authority to test, treat and detain a woman with active tuberculosis who had refused treatment. Laws like the 21st Century Cures Act in the US, can permit the clinical testing of drugs or devices without patient consent, provided they pose ‘no more than minimal risk’ to patients.
Now, we aren’t taking a side on any of these issues here. They are all are contentious. The point is that they all violate informed consent.
It is important to avoid conflating informed consent and moral permissibility, despite the near synonymy between the two in much of bioethics. One can reasonably argue that diseases like tuberculosis and COVID morally justify measures that pressure patients to undergo testing and vaccination. But that moral permissibility doesn’t imply informed consent is satisfied. On the contrary, if these measures are morally permissible, their permissibility must stem from the way they promote other moral values, such as reducing health risks. These values must be weighed against informed consent. In some cases, we might decide that, on balance, informed consent can be waived.
Let’s return to Zambia’s HIV testing policy. In sub-Saharan Africa, HIV/AIDS is a tremendous burden on public health. It affects the wellbeing of millions of people and requires significant resources to diagnose and treat, encumbering African healthcare systems for over 40 years. If—and this is a big ‘if’—if COVID justified the suspension of some aspects of informed consent, then surely the HIV pandemic does too.
We are not suggesting that informed consent should be abandoned wholesale. Indeed, in most cases it will remain the crucial determinant of permissible intervention. We are also not suggesting that Zambia or Western practices are always fully acceptable. Our point is simply that intuitions about these cases suggest informed consent must be weighed against other moral values.
The remaining question is how, exactly, this should be done. We argue the African ethical framework of Ubuntu can provide guidance. In particular, Ubuntu as a moderate form of communitarianism that recognises a balance between duties to community and individual rights can provide a principled approach to weighing informed consent against other moral values. Interestingly, not only does Ubuntu provide a plausible answer to how these values can be balanced in the context of Zambian HIV testing, but it can also offer a principled justification for Western practices as well.
Paper title: International bioethics, Ubuntu and HIV testing in Sub-Saharan Africa: an evaluation of Zambia’s HIV testing policy
Author(s) (do not include qualifications): Golden Mwinsa, Kasoka Kasoka, Benjamin Ferguson, Frances Griffiths
Affiliations: University of Warwick; Birkbeck, University of London; University of Warwick; University of Warwick
Competing interests: None
Social media accounts of post author(s): X Kasoka Kasoka @Kasoka14