Introduction
Although much has been accomplished over the last four decades, a great deal still needs to be done to reverse and end the HIV epidemic (Fauci and Lane
2020). For instance, notwithstanding the scientific progress made in HIV prevention and treatment, on September 21, 2020, the Joint United Nations Programme on HIV/AIDS (UNAIDS) reported that the world was unlikely to reach its 2020 90-90-90 targets (UNAIDS
2020a).
These targets aimed to have 90 per cent of people know their HIV status, 90 per cent of those who know their status to receive sustained antiretroviral therapy, and 90 per cent of those on antiretroviral therapy to have viral suppression. Achieving an AIDS-free generation is “more than a historic obligation to the 39 million people who have died of the disease”; it also provides an opportunity to realize a healthier, just, and equitable global society for future generations (UNAIDS
2014b, ¶1). However, it is impossible to realize an HIV-free generation without encouraging HIV testing uptake and bringing treatment to all those who need it (Fire in the Blood
2013; UNAIDS
2014b; Bajunirwe et al.
2018).
The 2021 United Nations Political Declaration on HIV and AIDS reported that the 90-90-90 targets have not been achieved, despite the knowledge and tools the global community now have to prevent new HIV infections as well as AIDS-related deaths (United Nations General Assembly
2021). The global AIDS epidemic thus remains “a global emergency and a paramount health, development, human rights and social challenge” (United Nations General Assembly
2021, 5).
According to UNAIDS, in 2020, 84 per cent of people living with HIV (PLHIV) on average (globally) knew their HIV status, 87 per cent of those were on treatment, and 90 per cent of those on treatment were virally suppressed (UNAIDS
2021a). Overall, approximately 680,000 (estimated range: 480,000-1.0 million) people died of AIDS-related illnesses and 1.5 million (1.0-2.0 million) people became newly infected with HIV in 2020, with new HIV infections increasing in at least thirty-three countries since 2016 (UNAIDS
2021a; United Nations General Assembly
2021).
HIV and Zambia
HIV prevalence in Zambia has stabilized at high levels (approximately 11.1 per cent of people aged 15–49 years are living with HIV) (UNAIDS
2020c). This makes Zambia one of the countries with the highest HIV burden (Heri et al.
2021). In 2019, 48,000 adults and 5,400 children were newly infected with HIV (compared with 2010 when 47,000 adults and 8,800 children were newly infected), while in 2018, 17,000 people died of AIDS-related illnesses (Avert
2020). As of 2019, 87 per cent of people living with HIV knew their HIV status, 89 per cent were on antiretroviral therapy, and 75 per cent were virally suppressed (all ages) (Avert
2020). These figures indicate that even after eight years of scientific advances, HIV incidence, prevalence, morbidity, and mortality continue to be a major problem in Zambia.
Hence, in August 2017, Zambia’s then president, Mr Edgar Lungu, pronounced: “HIV testing will now be among other tests to be done on patients to ascertain their state of health in order to provide timely and appropriate remedies,” and pledged to aid the country in its efforts to eliminate AIDS by 2030 (Siame
2017, ¶1). The president argued that the policy was justified given that “the HIV/AIDS scourge is one of the biggest threats to the country’s development,” and added that protecting the lives of those affected by HIV “overrides the human rights argument” regarding the need for consent (Siame
2017, ¶3,8). Zambia’s then health minister, Dr Chitalu Chilufya, challenged those opposed to compulsory HIV testing to consider the need to protect the common good—for example, protecting children yet to be born from preventable HIV infections (
The Mast Online2017).
It is important to note at this stage that while compulsory HIV testing may be ethically justifiable in certain circumstances, “particularly when coupled with guaranteed access to treatment and care” (Armstrong
2008, 1), forcing people in any given country to take an HIV test violates human dignity and impedes a successful HIV response (UNAIDS
2021b). Mandatory HIV testing is counterproductive because it prevents and deters people from seeking medical services and learning about their HIV status—especially vulnerable and key populations who already feel stigmatized and marginalized (Avert
2017).
The legality of the reported public policy declaration has not yet been challenged before Zambia’s courts of law. However, in earlier court judgements, for example,
Akashambatwa Mbikusita-Lewanika v Fredrick Chiluba (
1998) and
Kingaipe and Chookole v Attorney-General (
2010), it was held that human persons have a right to consent. Such rights are protected under the Zambian constitution (Republic of Zambia
1996).
Our Contribution
Our arguments in this paper focus on the importance of continuing to scale up HIV testing to ensure an effective HIV response that will meet the first 90 target (90 per cent of PLHIV know their HIV status) and, looking ahead, the first 95 target (the UNAIDS Fast-Track Strategy to have 95 per cent of PLHIV know their HIV status by 2030) (UNAIDS
2014a). For Zambia to achieve the 95-95-95 targets, it must continue scaling HIV testing uptake.
There are several reasons as to why we have concentrated on the first 90 and 95. HIV testing is critical to the HIV response because individuals can only start treatment if they know their HIV status. In other words, an HIV test result “opens the door to accessing the range of HIV options available depending on a person’s status to keep themselves and their loved ones HIV-free” and forms “the gateway to treatment and effective treatment (UNAIDS
n.d..” Moreover, by deciding to know one’s HIV status, “people are empowered to make choices about their right to health” (UNAIDS
n.d., 1). Thus, with Zambia still reporting fifty thousand new HIV infections per year (Byanyima
2021), it is imperative to scale up HIV testing to diagnose new infections in the country.
This is particularly imperative in the light of the advent of effective antiretroviral therapy (ART) and its increasing availability at no financial cost in Zambia (Amanzi, Michelo, and Chongwe
2016). HIV infection, which was once a death sentence, is now a serious condition that can be managed with effective treatment. A person living with HIV who is on such treatment and virally suppressed will live longer and is incapable of transmitting HIV to another person.
The undetectable = untransmittable (U=U) doctrine has its foundation in scientific evidence which indicates that PLHIV who consistently maintain undetectable viral loads for a period of at least six months with ART cannot transmit HIV to others (Patel et al.
2020). ART can make the viral load so low that it cannot even be detected by an HIV test—this is what is called an undetectable viral load (Centers for Disease Control and Prevention [CDC]
2021). This means that ART can now be effectively employed as both a treatment and prevention measure. HIV testing and knowing one’s status has therefore become ever more critical in the global HIV response.
Because of this, more innovative HIV testing approaches may be needed to scale up HIV testing in Zambia. To encourage uptake, it may also be necessary to review current HIV testing policies. We therefore invite the reader to consider whether a paradigm shift in HIV testing policies from those exclusively premised on personal autonomy is the way forward in the HIV response, particularly in the sub-Saharan context.
Numerous sub-Saharan countries have adopted HIV-specific laws and policies which have addressed, inter alia, HIV testing. For instance, twenty-six sub-Saharan countries have implemented HIV-specific laws and policies that forbid compulsory HIV testing, including for pregnant women, thereby establishing informed consent as a condition for such testing (Kongnyuy
2009; Eba
2015). This requirement also applies to laws and policies on HIV testing in Zambia (
Kingaipe and Chookole v Attorney-General2010; Kasoka
2018). Moreover, to respect the key principles of informed consent, confidentiality, and other values, Zambia has adopted the World Health Organization’s (WHO) consolidated guidelines on HIV testing (UNAIDS
2017). Consequently, Zambia practices both provider-initiated testing and counselling (PITC) as well as client-initiated counselling and testing (Kasoka
2018), all of which require respect for informed consent.
Although debate is ongoing as to whether informed consent requirements can actually be achieved in practice (Manson and O’Neill
2007), we believe that consent requirements play a crucial role in the response to the HIV epidemic. These include protecting individuals against inhumane and degrading treatment and privacy violations and the protection and promotion of everyone’s right to health and public health (Mann
1996; Kasoka
2018).
Nonetheless, given that the issue of HIV is a human rights concern that can, at best, be legitimately addressed by embracing a comprehensive human rights approach (Gumedze
2004), the question arises as to whether it is ethical to protect individual autonomy with respect to HIV testing without due regard for the rights of others in a given community. To put it another way, is the protection of individual autonomy a justified premise for informed consent requirements? Or is human autonomy so valuable that consent should be premised on this?
Several accounts of respect for informed consent in medical ethics claim that informed consent requirements are valuable because they support personal autonomy (O’Neill
2003; Naidoo and Vernillo
2012). As Schuck (
1994, 924) notes, “the most fundamental normative argument in favour of requiring health care providers to obtain patients’ informed consent to medical treatments proceeds from the principle of autonomy—the notion that each mature individual has a right to make the basic choices that affect her life prospects.” Faden and Beauchamp (
1986) define informed consent as a doctrine premised on the cherished societal value of autonomy that protects self-rule in medical decision-making. Mills (
2002, 60) also submits that the argument for consent as an indispensable precursor to treatment is grounded in the concept of patient autonomy, “which in turn is based upon the rights of individual self-determination and of bodily integrity.”
In a landmark high court judgement in Zambia (
Kingaipe and Chookole v Attorney-General2010), Judge Muyovwe ruled that testing individuals for HIV without their informed consent is unlawful. This case established a critical legal precedent because for the first time the court added “its voice to the chorus of recent
obiter dicta from several jurisdictions in the African region which declared that HIV testing without consent is a violation of human rights as set out in international human rights treaties and other normative instruments” (Malila
2012, 579. In passing her judgement, Judge Muyovwe, among other similar cases, invoked and celebrated the case of
Diau v Botswana Building Society (BBS)2003 (2) BLR 409 (BwlC)
, where the court held that: “informed consent is premised on the view that the person to be tested is the master of his own life and body” (
Kingaipe and Chookole v Attorney-General2010, J44). Thus, “the purpose of informed consent is to honour a person’s right to self-determination and freedom of choice” (
Kingaipe and Chookole v Attorney-General2010, J44.
Autonomy is one of the four core principles of modern bioethics, the others being beneficence, non-maleficence, and justice (Lawrence
2007). Respect for autonomy obliges healthcare providers to uphold the choices of patients who have decision-making capacity (Jahn
2011). Beneficence encompasses the following moral obligations: protect and defend the rights of others, prevent harm from occurring to others, remove conditions that will cause harm, and rescue persons in danger (Jahn
2011). Non-maleficence imposes an obligation to do no harm on others. Thus, both beneficence and non-maleficence encompass a number of rules including not to inflict harm or evil, to remove or prevent conditions that will cause harm or evil, and to do or promote good (Naidoo and Vernillo
2012). Finally, the principle of justice obliges health providers to “equitably distribute benefits, risks, costs and resources” (Jahn
2011, 225).
We suggest that the doctrines of beneficence, non-maleficence, and justice impose upon medical health providers a moral duty of care that extends beyond individual patients to society as a whole, resulting in the greatest benefit for all and distributive justice (Faden and Beauchamp
1986; Kinsinger
2009). This would involve implementing HIV testing for the benefit of both the individual and the greater good. This is not necessarily the case with the individual autonomy imperative as respect for individual autonomy begins and ends with an individual. This obliges healthcare providers to respect individuals as responsible for their own person and for their medical therapy, and able to shape their own lives according to their desires and goals (Entwistle, Carter, and McCaffery
2010).
The paramount need for autonomy is a common theme within legal, political, and moral discourse. Thus, “the giving of ‘informed consent’ by a patient has become the surrogate measure of whether medical interventions are ethically” or even legally acceptable (Milligan and Jones
2016, 21). Respect for informed consent requirements is deemed critical if we are to uphold the fundamental value of individual autonomy (Manson and O’Neill
2007), including with respect to HIV testing (Kudzala and Molyneux
2010; Kasoka
2020).
A major premise of autonomy is that individuals are by nature and/or nurture self-governing, self-determining, self-directing, and self-sufficient (Kant
1785; Endleman
1967; Dworkin
1988; Benson
1991; Mele
1995; Oshana
1998; Campbell
2002; O’Neill
2003; Taylor
2018; Christman
2009; Jackson
2013; Mill
2015; Kasoka
2018,
2020). In this paper, autonomy refers to a person’s capacity or ability to self-govern, which includes their moral independence (Oshana
1998; Gaylin and Jennings
2003; Killmister
2013; Mill
2015; Kasoka
2020).
However, is a human person really a “unified, happiness seeking, unbrokenly persisting, ontologically distinct conscious subject who is the owner of experiences, the thinker of thoughts, and the agent of actions” (Zahavi
2014, 42)? And/or is a human a self-moral agent whose autonomy we must protect, even in the context of HIV testing ethics (Kasoka
2020)? Even if it could be demonstrated that an individual is normatively, narratively, and/or morally autonomous, should individual agency take primacy over the collective or common good and due respect of rights of others, particularly in the HIV response in sub-Saharan Africa which disproportionately bears about two-thirds of the global HIV burden (UNAIDS
2020b;
2021a)?
Although extensive textual analyses of the issue of autonomy have been conducted in sub-Saharan Africa and beyond, no empirical study has examined the appropriateness of the value of individual autonomy, especially in the local context of HIV testing in Zambia, and rarely in other sub-Saharan African countries. In this manuscript we seek to answer two questions:
1)
What does individual autonomy in HIV testing, and healthcare practice in general, mean to people in Lusaka and Chongwe?
2)
What are the implications of participants’ views on promoting the primacy of individual autonomy in medical decision-making in Zambia, and sub-Saharan Africa as a whole?
This study adds to the debate surrounding individual autonomy, including Geoffrey Silavwe’s (
1995) article in which he argued that promoting the principle of individual autonomy is inappropriate in the Zambian setting. He asserted that Zambia should not be required to embrace universalized ethics that emanate from and correspond with Western cultures and realities.
Data Analysis
We conducted a hybrid analysis using both inductive and deductive approaches (Lacey and Luff
2007; Burnard et al.
2008; Swain
2018). Firstly, we conducted an inductive thematic analysis of data to develop codes. This involved repeatedly reading through transcripts to identify emerging and recurring themes. Secondly, the semi-structured interview guides were consulted to assess and confirm whether participants’ responses answered the research question(s). Thus, the coding process implemented in the generation of themes and subsequent consolidated findings involved systematically and manually re-reading transcripts and was informed by existing literature. This consequently led to the identification of themes, categories, patterns, and relationships from the data (O’Connor and Gibson
2003; Charmaz
2006; Thomas
2006; Burnard et al.
2008). The generated codes were verified and discussed between the authors and the first author’s supervisor to ensure consistency. Any discrepancies in codes were discussed until a consensus was reached.
The recurring themes that emerged from both interview and focus group discussion transcripts were taken as indicative of a shared understanding between participants (Flowers, Duncan, and Knussen
2003; Mack et al.
2005). The extracts presented in the results section were selected because they captured the recurrent themes expressed by the most articulate participants (Flowers, Duncan, and Knussen
2003). The finalization of the codes was an iterative process characterized by multiple rounds of data coding, reflection, consultation, and revision (Kasoka
2018).
The major themes that emerged were natural sociality, solidarity, cooperation and mutual responsibility and reciprocity, futurism and legacy, and religion. These are summarized as follows: 1) Natural sociality—human beings naturally born (without their will) into society and co-existing alongside other humans with whom they share common frailties and vulnerabilities (Gyekye
1997). 2) Solidarity—identification with others and working with and for each other to support the common good (Senghor
1964). 3) Cooperation, mutual responsibility, and reciprocity—these are interrelated terms which entail that a person does unto others as they would want others to do to them (mutual contribution) for both their own and the common good (Kaunda
1973; Tutu
1999; Masina
2000; Woods
2003; Gyekye
1997). 4) Futurism and legacy—respect, promotion, and protection of “a continuum of the dead, the living, and the yet unborn” to preserve future and collective good (Woods
2003). 5) Religion—belief in the presence of a high power that exercises rewards and punishment on the basis of, among other things, one’s faith and deeds towards God, oneself, and other human beings (Kaunda
1973; Tutu
1999; Gyekye
1997).
Discussion
This study explored the importance of personal autonomy in decision-making amongst people living in Lusaka and Chongwe, specifically within the context of universalized informed consent requirements in HIV testing. The study was designed to determine how personal autonomy is viewed in a local context, in this case Zambia.
The results indicate that nearly all participants viewed themselves, in the context of their lived experiences and perspectives, as born into the society; they perceived themselves as socialized, interconnected, and interdependent beings who have ontological reasons and a moral duty to promote the common good in order to enable mutual well-being and survival. The results also demonstrate that participants regarded human well-being as not merely individual but also social (Jones
2020) and thus considered HIV testing premised exclusively on personal autonomy as inappropriate/unjustifiable in their communities.
They reject ethical assumptions that “do not acknowledge the deeply relational and embedded reality of the human condition which inevitably shapes decision making”, and therefore constitute autonomy in real life (Milligan and Jones
2016, 21). Hardly any participants viewed themselves as being solely responsible for defining “one’s own concept of existence, meaning, the universe, and the mystery of human life” (
Planned Parenthood of SouthEastern PA. v. Casey (
1992), ¶20).
Their views on the nature of personhood in HIV testing are consistent with the dominant traditional African view which denies that any single human being can be described solely in terms of physical and psychological properties (Senghor
1964; Kaunda
1973; Kwesi
1977; Donnelly
1990; Gyekye
1995,
1997; Tutu
1999; Taylor
2018; Agulanna
2010; Denison et al.
2014; Malunga
2014; Kenyatta
2015). It is important to note that we have used the adjective “dominant” when referring to sub-Saharan African ontology to avoid simplifying the way of life of sub-Saharan African peoples as having a communitarian outlook. Our understanding in the light of available literature is that communitarian ethics are a dominant, persisting, and shared ethical position for the majority of people in sub-Saharan Africa (Gyekye
1995,
1997; Agulanna
2010). We are aware that not every person living in sub-Saharan Africa necessarily holds a homologous ontological outlook (Oyugi and Gitonga
1987).
Although participants generally suggested that the exercise of personal autonomy in HIV testing is acceptable in certain circumstances, the dominant view was that individuals should not strictly adhere to such a value in all circumstances. For example, they argued that doing so would be especially detrimental to fetal “rights,” injure the welfare of one’s immediate family, impede correct diagnosis and treatment, hinder appropriate national health planning, annihilate whole communities, and harm the economic and sociocultural well-being of their communities and country.
Participants suggested that by virtue of natural human interdependence, sociality, and interconnectedness, there are limits to how far a person’s desires, decisions, or actions should be upheld as fundamental. According to this view, “human beings have dignity by virtue of their capacity for community, understood as the combination of identifying with others and exhibiting solidarity with them” (Metz
2011, 532). This ontological and moral view of personhood repudiates any description of a person solely in terms of their physical and psychological properties (Nussbaum
2003).
We agree with the participants that personal autonomy ethics inspire individual solitariness, self-centredness, and self-actualization, often at the cost of the pursuit of the common good. Promoting the primacy of personal autonomy detaches an individual from his or her natural sociality, interconnectedness, and interdependence with other people. Such an approach neglects to acknowledge and protect the embedded, interlinked, and corporate nature of human existence.
The evolution of self-determination from city autonomy to individual rights (Schuck
1994; O’Neill
2003; Jackson
2013) has broadened the rights of individual persons almost to the extent of totally denigrating individuals’ moral obligation to the common good (Gaylin and Jennings
2003). Indeed, even “[t]he great philosopher of medicine, Hippocrates, would be shocked by the world of modern medicine and possibly hounded out of the medical profession and driven into poverty by” the current universalized consent requirements in HIV testing that are premised on individualism (Kurtz
2000, 1243).
The individual, who is embedded in a complex social and cultural environment and whose illness (if they are living with HIV) could affect other people, is framed as the sole author of his or her own medical treatment and life choices. They are told that they can choose to test or not to test because they are their own person and the author of their own life and destiny. Individuals’ rights and course of actions are primary, while collective rights are only recognized to the extent they support the enjoyment and protection of an individual’s rights and choices (Woods
2003).
Such an outlook represents an understanding to the effect that to be a human being is to demand protection and require help from others. Ironically, social responsibility (even when some international human rights instruments imply that human beings are interdependent) is relegated to mere interference with the value of an individual’s autonomy. Other human beings are expected to mind their own business because only the person whose autonomy we are enjoined to respect and celebrate has the right to “define the nature of her relationships with others” (Schuck
1994, 900).
In other words, an individual is epitomized and celebrated as a moral agent whose rational and moral choices need to be recognized and respected. Consequently, individual rights become individual claims to be protected from the interventions of other people (Niekerk
1998), who are inescapably directly or indirectly affected by their personal choices. It is troubling to appreciate that a person who is naturally dependent, vulnerable, fallible, and a moral agent (Ravven
2013; Kasoka
2020) is now proclaimed and celebrated as a rational and/or sovereign agent and their own person; it implies they are empowered by their inherent autonomy to choose and direct their own HIV medical therapy without interference from others.
A traditional African communitarian adherent would believe that “an injury to one person is an injury to all,” yet at the same time hold that the survival and well-being of the community is dependent upon the well-being of the individual (Elechi, Morris, and Schauer
2010, 75). Put differently, the traditional sub-Saharan African concept of personhood and human rights recognizes and promotes both the humanity of each person and the entitlement of other “people to unconditional respect, value and acceptance from one’s community” (Himonga, Taylor, and Pope
2013, 379). It holds that “every person has a corresponding duty to show the same respect, dignity, value and acceptance to each member of that community” (Himonga, Taylor, and Pope
2013, 379–380). This outlook on personhood advances a concept of co-responsibility and mutual enjoyment of human rights, as well as a human whose capacity for autonomy is only achievable through other people and God (or gods).
When we argue for a conception of social autonomy, we do not imply that individuals who refuse to test for HIV should be ruled by the appetites of the majority to ensure they test no matter what. Instead, the implication of our analysis is that socio-relational conceptions of autonomy are more philosophically and morally convincing than individualistic ones (Kasoka
2020). We appreciate that human beings are unique and distinct—physically, emotionally, mentally, and morally (Ravven
2013). However, we also recognize that humans are only able to exercise such uniqueness or their distinct self in a social context by virtue of human natural sociality, interdependence, and interconnectedness:
… the self is where our identity resides. It is the medium through which our actions are guided and our world is perceived … This is clear even from the dictionary definitions of self: “the total, essential, or particular being of a person,” or “the essential qualities distinguishing one person from another,” or “one’s consciousness of one’s own being or identity; the ego.”… [However] The self is not a truly autonomous ego, it is an interactive entity defined not just in terms of differences from others but in relationship to them. (Gaylin and Jennings
2003,145–146)
Thus, with regard to HIV testing policies in Zambia and other sub-Saharan African countries, HIV policymakers should arguably take heed of Darley, Luethge, and Blankson’s (
2013) conclusion that, due to the sub-Saharan African communal culture of belongingness, advertising appeals in sub-Saharan African countries should be focused on presenting the individual as a member of the community.
The doctrine of personhood invoked by participants in the present study has the realistic potential to provide an appropriate ethical premise and “foundation for a human rights paradigm that is capable of addressing the broad panoply of claims that are vital to the full attainment of human dignity” (Woods
2003, 55–56).
We suggest that rather than basing informed consent requirements on personal autonomy, it is shared human vulnerability, common human frailty, interdependence, love, friendship, and trust that should lie at the core of ethical decision-making in HIV testing in Zambia, and indeed across sub-Saharan Africa (Kasoka
2020). This serves to reframe autonomy in HIV testing in a way that deliberately acknowledges the illusion of personal autonomy and “considers [that] the unique moral frameworks, relationships, and cultures of individuals can provide a more ethically sensitive,” respectful, and realistic basis for decision making in HIV testing (Milligan and Jones
2016, 21).
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