Tag: Africa

COVID-19 vs. Childhood Immunization? A Bioethics Perspective from Nigeria

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This post is a part of our Bioethics in the News series

By Felix Chukwuneke, MD

Avoiding the Impending Calamity: Our Ethical Responsibility

United Nations Children’s Fund (UNICEF) has warned that COVID-19 is disrupting life-saving immunization services around the world, putting millions of children in both rich and poor countries alike at risk of diseases like diphtheria, measles and polio. UNICEF, the Sabin Vaccine Institute and Gavi, the Vaccine Alliance are also worried that thousands of children could die needlessly from the diseases that were hitherto controlled through vaccination but are now being redundant because of the lockdown and compulsory quarantine by the government of the day. UNICEF Executive Director Henrietta Fore stated that there is going to be a real problem as many of these already conquered preventable diseases for children such as measles, diphtheria and cholera are in the increase across the world.

“Immunization is one of the most powerful and fundamental disease prevention tools in the history of public health,” said Dr Tedros Adhanom Ghebreyesus, WHO Director-General. “Disruption to immunization programmes from the COVID-19 pandemic threatens to unwind decades of progress against vaccine-preventable diseases like measles.”

[WHO News release, May 22, 2020]

There is no doubt Africa will be the worst hit by this quarantine and lockdown policy. In a place where lack of education and poverty are commonplace, the rebound of these preventable diseases as a result of improper policy and control implementation will be unprecedented in the near future after we are done with the pandemic. Most governments especially in Africa did not take into consideration the sustenance of immunization programs and were more focused on the COVID-19 pandemic – the devastating effect of the disease cannot be equated to some of these childhood preventable diseases.

The quarantine and social lockdown have resulted in a drop in vaccination rates leaving several numbers of children open to diseases that were hitherto prevented. There is a need to step up campaigning once again on the importance of sustaining immunization that has been in place before the COVID-19 pandemic.

A 13-year-old male is receiving an intramuscular vaccination in the deltoid muscle from a nurse. His mother is standing behind him with her hand on his shoulder; they are smiling.
Image description: 2006 Content Provided by Judy Schmidt. This photograph shows a 13-year-old male receiving an intramuscular vaccination in the deltoid muscle, from a nurse. His mother is standing behind him with her hand on his shoulder; they are smiling. Image source: Centers for Disease Control and Prevention.

The Philosophy of Objectivism in Public Health Emergencies Such as the Coronavirus Pandemic

The mandate from a responsible government to ensure and protect the health of the public is an inherently moral pursuit with obligation to care for the well-being of its communities. In doing so the government should refrain from immediately engaging extreme measures. Further, the widespread deployment of uniform measures should first understand the peculiarity of the environments in which they will operate. Africans across many nation states, for example, live in a diversity of settings where communicable diseases are all too common. Many individuals live in poor living conditions necessitating proper advance planning of COVID-19 pandemic management. With that management, such planning should carefully consider the sustainability of the on-going vaccinations of childhood preventable diseases. Vaccinations have had an enormous beneficial impact on population health, and the related prevention of disease has been one of the single greatest public health achievements of the last century.

The questions I pose center on an exploration of which disease should rightly be given priority based on established fact. I question why there has been so much panic and fear about COVID-19. With the introduction of this novel disease, with a mortality rate lower than that of those diseases preventable by vaccination, should we permit gains made in vaccinating children against common childhood diseases to stop? With respect to more preventable diseases, especially those that affect children, why is there such an emphasis on COVID-19? Should mothers and caregivers give precedence to the COVID-19 pandemic, deferring their children’s routine immunization? Again, in an isolation and quarantine situation with strict governmental constraints on movement, how might childhood immunizations continue, especially in rural areas (assuming that accessible immunization centers are even open and operating)?

Currently, keeping to a routine immunization regimen by parents and caregivers is a challenge, especially for those who come from remote areas. The government, through the health ministry, should ideally put procedures in place for the duration of the pandemic to encourage all women to ensure that their children get access to these vaccines. It would be tragic to view this situation as a tradeoff, thus incurring the risk of returning to the horrors of polio, diphtheria, cholera and smallpox, and in doing so, allowing many to die of already controllable diseases.

Government Needs Proper Strategizing, COVID-19 Should Not Stop Normal Existence

There is no doubt that ethical challenges abound in quarantining people compulsorily, potentially against their decisions and will because of the COVID-19 pandemic. But more challenges abound when the government fails to take the precautionary measures necessary to ensure the continuity of the vaccination program for known and preventable childhood diseases. Because some of the latter are transmitted person-to-person there is, therefore, a need to provide both individual and public protection against the disease in addition to focusing on COVID-19. Though the COVID-19 pandemic may pose a health threat to many people across the globe, I suggest that there is even greater threat to personal liberty by compulsory quarantine and economic lockdown.

There is suspicion among some that the COVID-19 pandemic has been exaggerated, and that the measures currently in place across the world are not supported by the data. This doubt is illustrated by the Tanzanian President who had samples collected from goat, pawpaw and sheep for COVID-19, assigning human names to those animal samples. Reportedly, the related test results were positive, thus feeding the concerns on the accuracy of information regarding the incidence and prevalence of the infection, influence of co-morbidities, etc.

Demystifying the COVID-19 Pandemic While Achieving Health for All

Conflicting data notwithstanding, there are those who hold the opinion that measures taken by governments around the world are based on fear and speculations, and ultimately, might prove ineffective. It is argued here, that denying people their right to personal movement has a preventable impact on established vaccination programs, programs with known effectiveness in the reduction of mortality among children. High numbers of people are still being infected by those preventable diseases. It might also be argued that at present the imposition of a uniform isolation strategy is premature, especially with conflicting reports on its mode of transmission and degree of virulence. Perhaps it would be prudent to lay emphasis on practicing safe habits, building and supporting one’s immune system, maintaining proper hygiene, social distancing, and taking care of those most vulnerable ones among us such as the children and the elderly.

Felix Nzube Chukwuneke photo

Felix Nzube Chukwuneke, is a Fogarty Trained Bioethicist and Professor of Oral & Maxillofacial Surgery and Dean of Dentistry in the College of Medicine, University of Nigeria Nsukka (UNN) Enugu Campus. He is Chair of the UNESCO Bioethics Unit at the College of Medicine, University of Nigeria; Chair of the College of Medicine Research Ethics Committee (COMREC) and Chair of the Eastern Nigeria Research Ethics Forum (ENREF).

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 9, 2020. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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The Ethics of Becoming an Adult in a Health Research Setting in Africa

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Rose Mwangi

It is three years since the Centers for Disease Control and Prevention (CDC) reversed course to recommend that 11- to 12-year-old girls receive two doses of HPV vaccine to protect against cancers caused by human papillomavirus (HPV) infections, administered at least six months apart. This then overruled the previous “three dose” recommendation – but the CDC added the caveat that “teens and young adults who start the series later, at ages 15 through 26 years, will continue to need three doses of HPV vaccine to protect against cancer-causing HPV infection.”

When either recommending a health intervention or conducting research among adolescents (11-12 years), ethical principles require that in addition to the rightful consent processes, privacy and confidentiality especially should be observed. In that light, countries need to ensure that they meet some requirements of legal, ethical and moral issues pertaining to such situations. However, when it comes to adolescents, there commonly is some uncertainty about a proper ethical balance between protection from risks, confidentiality, privacy and the possible countervailing need for parental consent.

Global health
Image description: a black and silver stethoscope is curved around a small globe on a white background. Image source: Marco Verch/Flickr Creative Commons.

In resource-poor African settings, health access barriers are paramount, and they present major impediments to national and regional development across the continent. Additionally, before recommendations such as the aforementioned CDC HPV advice can be implemented, the pragmatic reality of the particular circumstances needs to be taken into consideration. There are other similar recommendations that are influenced by the vulnerabilities of women’s reproduction that fall into this same uncertainty.

A lack of clarity in ethical guidelines within African nations makes any attempt to follow the CDC recommendations a challenge. Moreover, there are additional dilemmas encountered when trying to follow basic ethical principles. These complexities influence the follow-up treatment for adolescents. In many cases it is the adolescent’s parents who take the primary role in decision making, oftentimes excluding those children in making decisions about their own health, and sometimes even denying them the potential benefits of health-preserving interventions. In essence, such African adolescents are left in a confused state of being both children and adults.

Using illustrative examples below, I draw from experience and insight in Tanzania. I make the case that the need for parental consent needs to be revisited so as to best customize the fit of that need to certain settings in reproductive health.

Contraceptive services
In many African countries the law is silent on the age a young person may access contraceptives. For example, according to a research conducted in Tanzania, 15 is the youngest age at which girls use contraceptives. Yet girls can obviously conceive before that age, and there is no law that prevents the usage of contraceptives at any age. Therefore, I argue that the default legal position requiring parental consent should be overruled; this would allow more freedom for young girls who wish to have access to reproductive control.

Age of consent for HIV testing
The age of consent for HIV testing is 16 years in Tanzania. Testing of persons under the age of 16 must be carried out with the consent of parents or legal guardians. However, the law does not stipulate a particular age at which an adolescent’s HIV status can be reported directly to him/her. It says only that test results are confidential and shall be shown only to the tested person with an exception of those under 18 years of age.

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Image description: The flag of Tanzania waves on a flagpole with blue sky in the background. Image source: Stefano C. Manservisi/Flickr Creative Commons.

Age of consent for Antiretroviral Therapy (ART)
In Tanzania, the 2001 national AIDS control policy provides universal access to ART. However, there are no explicit rules regarding either age specification or consent. The policy specifies that “people living with HIV and AIDS have the right to comprehensive health care and other social services including legal protection against all forms of discrimination and human rights abuse.” Parental consent for minors therefore should not have a role in accessing ART.

Age for consent and access for Pre-exposure Prophylaxis (PreP) and Post-exposure Prophylaxis (PEP)
In the same way that HIV-infected young people should have the rights and obligations to which they are entitled, so too should they have ready access to PreP and PEP. However, since no explicit rule is in place with regard to the age of consent, might we then safely/ethically assume that any person irrespective of age should have access to PreP? Similarly, it is not clear whether an adolescent should be allowed access to, or alternatively, be prohibited from PEP as the law and guidelines are silent on access for young persons.

Abortion and post-abortion care
In Tanzania, as in all other African countries, abortion is illegal. Tanzanian law is very clear on the consequences. However, there are no age-specific-rules regarding the age of consent for access to antenatal care (ANC). Indeed, when an adolescent becomes pregnant, regardless of the young woman’s age, health workers do not require parental consent for ANC. Therefore, I maintain that this dis-equal access amounts to a contradiction in the ethics of care.

Access to HPV vaccines and cervical cancer screening and treatment
Returning to my first point, globally, Tanzania has one of the highest incidences of cervical cancer. To address this health concern, the country recently has agreed to provide HPV vaccine for girls aged 9-13 years. What then is the parental role?

This message from CDC Director Tom Frieden, MD, MPH, in a 2016 press release could perhaps be viewed as clear and feasibly be implemented in a developed country:

“Safe, effective, and long-lasting protection against HPV cancers with two visits instead of three means more Americans will be protected from cancer. This recommendation will make it simpler for parents to get their children protected in time.”

This CDC claim about simplicity presumes that such parental consent would be forthcoming and would therefore equate to full HPV protection for the adolescent. But as I’ve pointed out, that might not be the case in Tanzania and other developing countries.  Perhaps we then should take a new approach in dealing with ethical issues related to accessing health in low-resource settings. Parents have an important role in ensuring the health of the adolescents, yet as I’ve demonstrated in the above, in those areas of a sensitive reproductive nature, the parental role may need to be secondary so as to ensure the adolescent’s health and well-being. If reproductive health interventions among adolescents are to succeed, perhaps we need to reach out directly to adolescents. When considering the daunting health risks adolescents face in low-resource settings, there is a need to lower access barriers and allow adolescents to consent on their own behalf. This then would give them the freedom to decide when and with whom they wish to share such sensitive information, and to directly benefit from available health interventions. This needed policy shift would place the ethics of becoming an adult in resource-challenged settings on another level.

Rose Mwangi photoMs. Rose Mwangi is a past beneficiary of an NIH Fogarty Fellowship at the Michigan State University Center for Ethics and Humanities in the Life Sciences. She has participated as an observer in Community Research IRBs at Michigan State University. Ms. Mwangi is very involved in Pan-African Bioethics and does research ethics in Tanzania. She has been involved in international clinical trials playing a key role in developing consent processes for rural and low literate communities; she has done important systematic qualitative studies advocating for social responsibility among global health researchers. Her recent milestone is leading the development and integration of Bioethics curriculum at Kilimanjaro Christian Medical University College (KCMUCo) as part of the European and Developing countries Partnership (EDCTP) in which UK and Tanzania are key stakeholders. Ms. Mwangi Co-Chairs the Institute Review Board (IRB) and is the Bioethics and Research Ethics instructor at KCMUCo and other medical institutions in Tanzania.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 11, 2019. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

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Informed Consent in Africa for Adolescents’ Participation in Health Research

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Rose Mwangi

I am writing to respond to a recent statement from the Co-chair of the International Vaccine Task Force (IVTF) who, in a World Bank press release, said, “We must urgently prioritize clinical research both to save lives in low-income settings, and to generate valuable information that is a global public good.”

The purpose of this article is to highlight realities of the processes that will get us to that “valuable information.”

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Image description: an individual in Kenya is photographed from the side while looking into a microscope. Image source: GSK/Flickr Creative Commons.

Researchers working with adolescents are confronted with ethical consent challenges attracting significant controversies over ethical guidelines regarding how decisions ought to be made in order for adolescents to participate in research.

Traditionally, parents have been the default decision-makers for adolescents regarding their health and/or participation in research. International guidelines also stipulate that informed consent must be given by adults, and that minors cannot provide informed consent for participation in research unless there is parental guidance or guardian permission to participate. But let’s look at the realities of the situation.

In March 2016, a study provided what they called “first-ever” national estimates of abortion incidences in Tanzania. The authors reported that 66,600 women received post-abortion care in health facilities for complications resulting from unsafe abortion in 2013 alone. Additionally, an estimated 100,000 women with complications failed to get the medical attention they needed. If we take this study as a tip of an iceberg—while we may not know whether the study was plagued by difficulty recruiting adolescent participants, or whether there are plans to further study unsafe abortion among adolescents—one may hypothesize that the majority of women under 18 in these groups did not have access to contraceptives because any intervention requiring parental consent would probably have been unfruitful, and they resulted to (unsafe) abortions against restriction by law. Thus, if we want to decrease maternal mortality among adolescents, we must ask more questions, for instance: In this study, who are these women? Could they be women of adolescent age who got pregnant, and secretly got involved in unsafe abortion because as minors they needed parental consent to use contraceptives?

Who is an adult?

The Tanzania guidelines for ethical clearance state that anyone below the age of 18 can only participate in research if a parent or guardian consents for their participation, and the concept of an emancipated minor may not be legally recognized. However, there’s clearly a conflict between the consent process in research, culture, religion, and what is legally constituted under the marriage act. In terms of religion, a Muslim girl can be married under the age of 18 years; the country’s constitution states that a boy can marry at 18 years and a girl at 15 years (Tanzania Marriage Act). The guidelines ambiguously talk about the category of emancipated minors as a legal mechanism by which the minor is freed from control by their parent. Although emancipation can be granted without due court process when a minor is bound to make a decision alone in the absence of the parents (in this case, marriage), in this conflict, does research participation call for a more stringent standard than getting married does?

Yet, in many instances in low-resource settings, poverty-driven young people below the age of 18 leave their parents in the rural areas and move to urban settings in search of greener pastures, whether to look for jobs to fend for themselves, and/or hopefully take care of their poor parents back in the rural areas. In the cities, they adopt independent lifestyles; girls may get married while the boys may take up social and economic activities, which even the parents/guardians may not know of. At present, this sort of economic independence is not recognized, and the minors cannot seek approval from the court or others to gain emancipated status.

Seeking adolescents’ consent in a low-resource setting

It is still not clear whether the assent should be verbal or signed by the adolescent, or who is the acceptable guardian where a parent is not available. This remains a silent dilemma to research ethics committees in low-resource settings. Who should consent for minors such as sex workers, hotel and bar workers, house helps, food vendors, hairdressers, etc., or young men who are involved in the transport industry and assist in loading or driving local public transport systems and other small businesses? Ironically, these are occupational activities that put the young population in these settings at risk of infectious and non-communicable diseases, an area where urgent interventions are required.

Parental informed consent among adolescents in these settings

According to the ethical guidelines, involving adolescents below the adult age of 18 would be considered a violation of the informed consent process. However, since emancipated minors are legally adults, it is high time that Tanzania and other countries in similar circumstances widened the legal recognition of adolescents other than by marriage, enabling them to participate in research on their own. Because in situations where adolescents are independent, obtaining legal consent becomes even more difficult when parents or guardians cannot be reached.

The obvious questions are: Is it realistic to look for parental consent from a parent who is solely dependent on the young adolescent for upkeep? Should these adolescents be excluded in health research? What should be the age limit for assent in such settings?

While one may argue that challenges to adolescent consent are the same across the world, there are more differences among low-income settings where cultural practices prevail, e.g., an adolescent in the U.S. is socialized in a setting where the development of society is based upon the rights of an individual, and autonomy is established when an individual reaches the age of 18. On the other hand, in an African setting, a 16-year-old may be operating at the level of a 25-year-old in terms of responsibility and decision-making, while an 18-year-old’s consent is still driven by centuries-old traditions that affirm the importance of community, society, and family. Thus, to emphasize the personal choice to participate in a clinical trial requires more interventions targeting the adolescents if we are to get valuable information that would help reduce mortality from unsafe abortions in settings restricted by law and poor resources.

Empirical evidence

With no clear empirical evidence on how many independent adolescents below the legal adult age are out there, it is difficult to make any generalizable conclusions. There is also no existing universal agreement as to what age minors can be taken as making competent decisions to participate in research among poverty-stricken hierarchical structures and cultural practices. Among the Masai, for example, the hierarchical structures and marriage practices are different from the majority of population; Masai can marry before the age of 18 years and the husband then becomes the guardian of the wife who is also below the legal adult age. Ironically, despite the legal restrictions, married adolescents across the continents who are below the age of 18 are considered emancipated minors. It would be interesting to establish whether emancipated female counterparts in U.S. and Europe would have a more independent decision over themselves in similar scenarios.

Image
Image description: an illustrated cartoon depicts children in a classroom. A speech bubble above the children reads, “If we don’t know which drugs are safest and most effective for pregnant women and children, why don’t they just let us into more clinical trials?” The speech bubble from the teacher reads, “To protect you from untested drugs.” Image source: Hilda Bastian/statistically-funny.blogspot.com.

Participation of adolescents in health research: The impact

While debating on realities of informed consent among adolescents in low-resource settings, a significant number may be affected by reproductive health problems, among others. It is thus important to put all efforts toward collecting data from adolescents as sole decision-makers: massive exclusion of adolescents below 18 years of age in health research would prevent researchers from identifying actual targeted or enhanced lifetime risk of diseases, or from monitoring them in the future.

In low-income settings, young and independent adolescents can contribute a lot to research findings for diseases that are prevalent among adolescents. Excluding them on the basis of being below the age of 18 is quite unethical, unrealistic and unfair while reporting 21% new HIV infections among 13- to 24-year-olds. Furthermore in developing countries, the majority of participants in research have low literacy rates, yet it is assumed that parents and guardians will understand the complex informed consent processes on behalf of the independent adolescent. As indicated by Fletcher et al. (2018), the need to be more sensitive to the social, cultural, structural, as well as medical needs of all individuals is even more urgent.

Conclusion

The way forward is to first come up with empirical evidence, and to then enact laws and processes that enable the legal emancipation of minors who are 15-17 years old, whether they are married or not, particularly in low-resource settings. I strongly agree with other authors who have stipulated that adolescents should be granted more authority and rights over themselves, while at the same time protecting them from risks as independent human subjects (Iltis, 2013; Barina & Bishop, 2013; Kuther & Posada, 2004).

Rose Mwangi photoMs. Rose Mwangi is a past beneficiary of an NIH Fogarty Fellowship at the Michigan State University Center for Ethics and Humanities in the Life Sciences. She has participated as an observer in Community Research IRBs at Michigan State University.

Ms. Mwangi is very involved in Pan-African Bioethics and does research ethics in Tanzania. She has been involved in international clinical trials playing a key role in developing consent processes for rural and low literate communities; she has done important systematic qualitative studies presented in international conferences advocating for social responsibility among global health researchers which is now a video training tool for bioethics at Kilimanjaro Christian Medical University College (KCMUCo). Ms. Mwangi Co-Chairs the Institute Review Board (IRB) and is the Bioethics and Research Ethics instructor at KCMUCo both for undergraduates and postgraduates.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 28, 2018. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

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Ebola: A Tough Teacher

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Ann Mongoven, Ph.D.

The unfolding tragedy of Ebola in West Africa offers painful ethical lessons about international epidemic control. International public health organizations should re-frame infectious disease preparedness along lines of natural disaster response. Stricken regions may need not only expert advice, but also the infusion of mobile infrastructure. Unstricken (as of yet?) populations must remember that the greatest danger of epidemics may be the psychological tendency to ascribe “Otherness” to the sick or vulnerable.

Lesson 1: Basic health systems are basic to health care.

This should be, but regrettably is not, a case of stating the obvious. Insuring basic medical supplies are on hand, designing incentives to encourage distribution of health professionals according to needs, and equalizing access to care are economically and politically tall orders in wealthy countries, let alone resource-challenged ones. Developing basic health infrastructure does not give glory to aid organizations the way targeting a specific disease does—even though virtually all disease-fighting depends on that.

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Army researcher fighting Ebola on front lines. Photo by Dr. Randal J. Schoepp.

It is a basic problem that not all countries have basic health systems in place, while others have systems so basic that there is no reserve to confront a new threat. Ebola is exploding in countries that were already systems-stretched. This contributes not only to its spread, but also to what Medicine Sans Frontiers director Dr. Joanne Liu calls the “emergency unfolding within the emergency.” The demands of trying to contain Ebola have drained all regional health resources and staff, leaving people with “ordinary” acute crises—malaria, tuberculosis, AIDS, complicated childbirth—with no care.

International epidemic control vehicles such as the CDC’s famed Epidemiological Intelligence Service and similar units within the World Health Organizations are framed as consultants to health systems. They provide concerted expertise, surveillance systems, and sometimes highly specialized laboratory services not expected to be available locally. But advice to health systems, no matter how good, can’t be effective when there is no effective health system to take the advice, or when a minimal health system is inundated by an epidemic.

The campaign against Ebola needs an infusion on the ground of organized public health professionals who will not only roll up their sleeves and don gloves, but also bring the gloves. Ebola teaches that international epidemic control must be modeled after international aid for natural disasters. Mobile units that can deliver an infrastructure—in this case protective gear, IVs and tubing, clean needles, disinfectant, etc.—should be stockpiled for ready deployment. Disaster relief first responder organizations should include infectious disease professionals and volunteers. As Dr. Liu argues, international response to Ebola should have looked more like international response to the earthquake in Haiti.

Lesson 2: Disease stigma is as life-threatening as disease.

This Ebola outbreak began in March. It was a multi-town outbreak by the time it was recognized, the result of travel to the funeral of the first victims by out-of-town relatives. Initially the outbreak straddled the border of three countries: Guinea, Sierra Leone, and Liberia. (It has since spread to Nigeria, probably by air travel.) Epidemiologists and aid workers sounded an international alarm in response. The world yawned.

In her classic, Illness as Metaphor,¹ Susan Sontag dramatized the delusional tendency of the well to ascribe to the sick the character of a threatening “Other.” The sick Other is perceived as somehow morally inferior, somehow different, somehow vulnerable in ways that the well wish not to think so of themselves.

In this case, the view of the Other may have preceded the epidemic. The world’s initial yawn reflects the extent to which Africans are generally viewed as Other by many of the world’s non-African affluent. A terrible threat causing lost lives may have been dismissed as routine for those Others in West Africa, though it would be anything but for themselves. And despite the dispersed initial presentation, a wrong-headed conception of isolated rural villages lulled the international community into thinking the epidemic would be quickly contained. When SARS broke out in urban China and Singapore, everyone realized the danger of geographic mobility, from migrant workers to bankers. But somehow the geographic mobility of Africans, and the interconnection between urban and rural Africa, came as a surprise.

People already defined as Other become even more Other than other ill when they get sick. Yet the begged question of whether racism contributed to the too-little-too-late international response to the epidemic seems studiously avoided in public discussion. Hurrah for the courage of the satirical Onion, which headlined a recent edition “Ebola Vaccine At Least 50 White People Away.”

President-Sirleaf
Liberian President Ellen Johnson Sirleaf

The power of Liberian President Ellen Johnson Sirleaf’s personal call to President Obama—requesting that highly limited supplies of new experimental drugs be made available to some West African patients, not only to returned white expatriate aid workers—rested on the unacknowledged racism that it dramatically combatted. Here was the Harvard-educated African president of a nation created by ex-American slaves begging the half-African president of the United States to include Africans in potentially life-saving therapeutic drug trials for an African epidemic. (Ironically, due to pharmaceutical outsourcing, Africa may bear disproportionate ethical risk for the routine development of new drugs in clinical trials—without necessarily receiving corresponding benefit.)

The characterization of victims as Other intertwines with the rhetoric of a “war on disease” in dangerous ways. The prevalence of war metaphors for medicine and public health increased after the totalizing nature of the second world war. That family of metaphors has been newly accentuated by current world attention on international terrorism. But what are we “battling” when we “fight” that “terroristic” virus, Ebola? As Sontag notes, there is a fine line between characterizing disease as the enemy and concluding the diseased are the enemy. If “harborers of terrorists” can be treated as terrorists in the “war on terror,” then why not Ebola patients? Ebola sufferers become viewed not as victims of bad luck, but as morally suspect.

Ascribing ontological and moral Otherness to sick people fuels disease stigma that is as life-threatening as the disease itself. It encourages people to deny illness for the sake of self- and family-protection. This is especially true when local resources are strapped to the point where reporting or quarantining may bring down the full weight of disease stigma without offering significant medical treatment. The degree of stigma that has come to be associated with Ebola, as well as the resistance of sick or vulnerable people to being portrayed as the enemy, explains otherwise health-defeating phenomenon in the epidemic. In Monrovia, Liberia, healthy people overran an Ebola clinic, urging patients to leave, scattering bloody sheets, and claiming there is no such thing as Ebola. Also in war-recovering Liberia, the war-like image of barbed-wire fencing quarantining a 50,000-person suburb prompted the defensive (but not to Ebola) response of the inhabitants storming the barricades. Social re-framing to reduce disease stigma will be as important as any medical breakthrough to the containment of Ebola—and of future terrifying, but not terrorist, epidemics.

References:

mongovenAnn Mongoven, Ph.D., is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, September 11, 2014. With your participation, we hope to create discussions rich with insights from diverse perspectives. You must provide your name and email address to leave a comment. Your email address will not be made public.