Ebola and the Ethics of Using Unproven Drugs
by Allan Barsky, J.D., MSW, Ph.D.
Editor’s Note: This article was written in August 2014. As of October 1, 2014, the number of reported cases in West Africa has exceeded 6,000, with more than 3,000 deaths. Other developments have emerged, as well, including the first case of Ebola diagnosed in the U.S. in late September.
By the first week of August 2014, more than 2,100 people in the west African countries of Liberia, Sierra Leone, Nigeria, and Guinea had contracted the Ebola virus. More than 1,100 of these people had died from Ebola.
In the midst of this epidemic, people with Ebola were told there was no cure. Although some pharmaceutical companies were in early stages of developing a curative treatment for Ebola, no medications had been tested on humans.
Frenzy erupted in American media when news broke that two American health workers who had contracted Ebola were being transported from Africa to Emory University Hospital in Atlanta, GA. Fear spread that these health workers could spread Ebola in the United States, putting this country at risk of an epidemic. Further news emerged that the two American health workers were provided with an untested medication, ZMapp, and that this medication had cured the Ebola.
The optics of the situation raised many concerns: Why were Africans told there was no medication for them, but “just enough” medication had been found for two White Americans? By what ethical standards is it okay to provide life-saving treatment to some people and withhold it from others? Was racism a motivating factor?
For social workers, this situation raises questions of social justice and respect for the dignity and worth of all people. Still, we must be careful to avoid a rush to judgment. When analyzing ethical issues, we need to consider not just what we know, but what we do not know:
1. What is the effectiveness of ZMapp, and what are its risks?
Even if two Americans seemed to recover from Ebola after taking ZMapp, we do not know whether ZMapp was the actual cause of their recovery, whether there were other intervening factors, and whether ZMapp would be equally effective for others who could take the medication. As we know from research courses, an “n” of 2 and a nonrandomized sample raise questions about the generalizability of the findings.
2. What were the motivating factors for providing ZMapp to Americans, while not providing it to Africans?
If the rationale was based on racist factors (“White American lives are worth more”), then the decisions violate ethical principles of social justice and respect. Alternatively, the World Health Organization and other decision-making bodies may have used other factors that are ethically justifiable.
Consider the history of using vulnerable populations to test new drugs and medical interventions. If the untested medications were provided to Africans and they suffered negative effects (e.g., hastening of death, greater pain), it may have appeared to some that American pharmaceutical companies or researchers were using Africans as “guinea pigs.”
Another possible motivation relates to conditions in the west African countries. How did the financial, economic, political, health, and social challenges in these countries weigh in the decision not to provide Africans with the medications? If the issues were purely financial—the American government could pay for the medications and the African governments could not—then again, we have a violation of the principles of social justice.
On the other hand, perhaps the conditions on the ground made it difficult to administer and monitor the administration of the medications. Some African communities may have lacked basic necessities, such as water and electricity (e.g., if the medications needed to be refrigerated).
Likewise, we would need to know whether the African governments would have approved administration of the medications. The U.S. government (including the Centers for Disease Control) acted unusually quickly to allow administration of an untested drug. Were the African governments even asked?
3. What forms of help were provided to the Africans?
When considering whether it is ethical to withhold a certain type of help to a particular client or group, one should also consider what forms of help were offered. Although each person’s life is deserving of dignity and respect, we may also need to consider the greater good. During the Ebola epidemic, controlling the spread of Ebola may be a greater need than treating those who have already contracted this disease. Given distrust of the medical professions in some African communities, many people may have resisted receiving “untested drugs.” Ultimately, it may be more helpful to work with the community to help isolate those with Ebola, protecting the rest of the population.
4. What forms of treatment will be made available to Africans in the near future?
Even if ZMapp is an effective treatment, how much ZMapp is currently available, and how soon could it be made available, particularly to those in dire need? In ethics, the question is not simply what has been done, but what can be done. Thus, even if the initial choice to provide medications to two White Americans is questionable, the decisions of governments, pharmaceutical companies, and health care workers moving forward can make the situation ethically better—or worse.
If governments can work out reasonable protocols to make medications available, the benefits of the medications may be maximized and the risks reduced. ZMapp is not the only Ebola medication under development. At what stages of development and testing are the other medications, and what does early research suggest about their efficacy and risks? What type of encouragement or support do pharmaceutical companies need to develop treatments—not just to cure Ebola, but also to prevent its spread? And how can communities in west Africa and elsewhere act to reduce or eliminate further transmission of Ebola?
For social workers, the lessons of the Ebola epidemic extend beyond the use of unproven medications. Social work interventions comprise a range of talk therapies, counseling, advocacy, mediation, brokering, community organization, prevention campaigns, and other services. When we choose to offer clients particular models of intervention, we need to have sound rationale for using them. We should identify the best research evidence available, so we can help clients select the interventions that are most likely to be effective. We should be cautious about using untested interventions. We should involve our clients in making decisions about what interventions we are using—including whether we know the full extent of the risks and benefits of the interventions.
When we are working with ethnic minorities, people living in poverty, or other vulnerable populations, we should be particularly careful about the use of unproven interventions. On one hand, we do not want to exploit vulnerable populations to test these interventions. On the other hand, we do not want to withhold potentially helpful interventions simply because the client comes from a potentially vulnerable situation. We also need to work with communities, not just individuals, to promote good health and social functioning for all.
Finally, we should be careful about rushing to judgment. What might seem unethical at first may look different after we have gathered and assessed all the facts. In the midst of an urgent situation, it is difficult to assess all factors. Although we need to make ethical decisions in the moment, it is helpful to reflect back and evaluate the ethical implications when we have more information and the benefit of a longer-term perspective.
Dr. Allan Barsky is Professor of Social Work at Florida Atlantic University and former Chair of the National Ethics Committee of the National Association of Social Workers. He is the author of Ethics and Values in Social Work (Oxford University Press), Conflict Resolution for the Helping Professions (Oxford University Press), and Clinicians in Court (Guilford Press). The views expressed in this article do not necessarily reflect the views of any of the organizations with which Dr. Barsky is affiliated.