Ethics of the Ebola Crisis

Wilkinson, A., and M. Leach. 2015. Briefing: Ebola—Myths, realities and structural violence. African Affairs 114/454: 136–148. Available at: http://dx.doi.org/10.1093/afraf/adu080

World Health Organization. n.d. Health care-associated infections. Fact Sheet. Available at: http://www.who.int/gpsc/country_ work/burden_hcai/en (accessed 11 January 2015).

Heightened Vulnerability, Reduced Oversight, and Ethical Breaches on the Internet in the West African Ebola Epidemic C. Raina MacIntyre, University of New South Wales Joanne F. Travaglia, University of New South Wales Ebola is a disaster, affecting the poorest countries in the world. Disasters increase the risk of ethical breaches, because of heightened vulnerability and reduced oversight. Issues of availability of drugs and health care and conduct of clinical trials have already triggered discussions about ethics, but other issues have escaped criticism. These include breach of patient privacy and public posting of photographs and details about Ebola patients on the Internet. Internet bloggers may provide health advice in areas beyond their expertise. The results can be misleading, dangerous, and unethical when human lives are at stake. This commentary explores the effect of heightened vulnerability and reduced oversight on some of the less acknowledged aspects of ethics on the Internet in the West African Ebola epidemic, and the need for an global accountability framework for medical ethics in social media. The fundamental principles of medical ethics are intended to underpin all aspects of medicine and medical research. These principles originate from the Nuremberg Code and the Declaration of Helsinki (Hanauske-Abel 1996; World Medical Association 2013) and were developed in the aftermath of Nazi medicine (Lifton 2000). The best known medical injunction, “above all, do no harm,” maintains both its normative power and its symbolic power in medical practice. Other tenets of medical ethics, including informed consent, the right to privacy, and a respect for human dignity, underscore the assertion that all decisions made in medicine must weigh the harm versus benefit to the patient or client.

These principles, injunctions, and assertions are intended, without exception, to apply across all times, settings, and contexts in which medicine (and indeed all clinical activities) occurs, including on the Internet. Yet as Hurricane Katrina highlighted, disasters are catalysts for the creation of immediate ethical problems and potential breaches (Fink 2013). The use of the Internet in disasters adds a new layer of complexity to the problem. Disasters, of which the Ebola epidemic is an example, increase the risk of ethical breaches. They do so because they present a unique combination of the heightened vulnerability and reduced oversight. Disasters, by definition, are situations that exceed a community’s (region’s or country’s) capacity to respond and recover from that situation. Both the scale of the disaster and the fluidity of the situation (external factors), along with individuals’ and groups’ inherent vulnerability (susceptibility to harm, exposure, resilience, resources), contribute to their degree of risk. Nor are disasters evenly distributed. Poorer countries and poorer individuals have greater exposures and lower response capabilities to disasters. The Ebola epidemic is a case in point. It has affected some of the poorest countries in the poorest continent in the world. The gross domestic products (GDPs) of Sierra Leone and Liberia are 4.93 and 1.95, respectively, compared to 522 for Nigeria (World Bank 2014). The setting for the epidemic was therefore already in a region comprising vulnerable populations. That victims, survivors, and responders are vulnerable to physical and psychological injuries is clearly

Ó C. Raina MacIntyre and Joanne F. Travaglia This is an Open Access article. Non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly attributed, cited, and is not altered, transformed, or built upon in any way, is permitted. The moral rights of the named author(s) have been asserted. Address correspondence to Prof. C. Raina MacIntyre, School of Public Health and Community Medicine, Faculty of Medicine, University of New South Wales, Sydney, NSW 2052, Australia. E-mail: [email protected]

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understood. Less well examined is the potential risk posed by the responses to disasters. In many cases the risk may be to the responders themselves, as in the case of those charged with “cleaning up” the Chernobyl (Travaglia, Hughes, and Braithwaite 2011) and Fukushima nuclear disasters, and as in the case of Ebola, where more than 800 health care workers have been infected, and it is recognized as a high occupational risk (Vibe Ghana 2015). Risks to vulnerable individuals can also arise from the responders themselves. Disasters attract a wide range of responders, both professional and volunteers, for short periods of time, and many of these lack specialist training in either emergency or disaster medicine. The result is a diverse range and scope of practices and standards at a time where both coordination and supervision are scant. Because of the lack of oversight and the simultaneous urgent need for human resources, individuals who flock to a disaster with good intentions may not have the right skills to contribute in a useful fashion. Worse still, their very presence—either physical or virtual (on the Internet, as discussed later)—can cause active harm to vulnerable individuals. Some issues around Ebola ethics, such as those of equity in clinical decision making, have drawn attention and debate, including issues of “race” and socioeconomics. These have included the decision to use Z-Mapp biopharmaceutical drug for some, but not other, patients. Similar questions have been raised about the establishment of well-equipped field hospitals for expatriates while access to health care for local patients remains minimal. The longterm weakening of organizational and society infrastructures due to postcolonialism, civil wars, and dependence on foreign assistance has also been highlighted. West African voices were not heard in the throng of media and attention about the epidemic, and relatively few of the scientific papers which that arisen from the epidemic to date have been led or informed by West Africans, despite most requiring the collaboration of African experts. Of a paper led by U.S. authors, five coauthors, all Sierra Leonians, died of Ebola before the paper was published (Vogel 2014). The unspoken fact is that scientists, while making important contributions, also profit from high-profile health disasters. They gain research funding, publications, and recognition, and thus many flock to build reputations on disasters such as Ebola. A PubMed search in January 2015 finds a near doubling of publications on Ebola after the current West African epidemic, with many being opinion pieces. Still, the 3000 publications on Ebola at this time compares to more than 80,000 publications for influenza, highlighting how poorly studied Ebola has been, particularly prior to the current epidemic. Nonetheless, medical publishing is tightly regulated for ethics. In contrast, social media are largely unregulated, with unclear and unenforceable frameworks for accountability across countries, and many issues related to mass media have passed without comment or objection. Much has been made of the use of the media, and in particular social media, including Facebook, Twitter,

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blogs, Flickr, and YouTube, in preventing, educating, alerting, responding to, and rebuilding from disasters (Houston et al. 2015). The Internet has become a powerful and influential factor in disasters, with positive as well as negative consequences. While evaluations of specific instances of the use of such media have been published, such as the role of media in driving change in Ebola PPE guidelines (MacIntyre et al. 2014), there has been little critical analysis of the potential for harm or ethical issues around the use of such sites. As the Ebola epidemic unfolded, the Internet, news agencies, blogs, Twitter, governmental and nongovernmental organization (NGO) sites around the world, and other mass media became critical sources of rapid information for Ebola responders. It became clear early on that many aspects of the provision of information about Ebola raised numerous ethical questions. One example is breach of patient privacy. One blog site regularly posted identifying, explicit photographs of Ebola patients, including children, and on one occasion the name and passport number of a traveler suspected of having Ebola. This practice would be unacceptable in developed countries, and would result in censure and disciplinary action against health practitioners. Others, usually visitors from developed countries, used the backdrop of Ebola for photo opportunities and organizational promotion, posing with patients and survivors. Non-African media agencies consumed and produced such images, while at the same time patronizing the peoples of West Africa, ridiculing their health beliefs (such as not believing in Ebola as a real disease, and rejecting cremation of their dead), and attributing blame for the escalating epidemic to African fear and ignorance (Mark 2014). Media footage of an “escaped” Ebola patient, first reported as a risk for the spread of infection and resistance to quarantine, was only later more fully explained in their context of the patient needing “escape” to find food—but the media focus remained largely on the hazard posed of the “escaped Ebola patient creates mass panic at market” type. A Google search of the terms “escaped Ebola patient searching for food” identified 8,120,000 results in 0.19 seconds. Not a single follow-up story of whether that person found food, or whether the person recovered, has been found to date. The sum effect of this aspect of mass media further disempowers the victims of Ebola and heightens vulnerability. The Internet offers many sources of information, many from blog sites established by experts in specific fields, who comment broadly on all other areas. Health blogs are increasingly accepted as reputable sources of rapid information. Many bloggers have established a public profile where they may be mistakenly viewed as experts in area where they have limited or no expertise. Many infectious diseases blogs are established by health experts or scientists with a specific narrow track record (e.g., a laboratory virologist or a general practitioner), and are followed by both lay people and medical experts because they offer more rapid and accessible information than peer-reviewed

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Ethics of the Ebola Crisis

publications and also consolidate information from multiple sources. Scientist expert bloggers, therefore, build up large followings on social media, based on their accessibility and interactive use of social media, and can be highly influential, even on health professionals seeking information on the Internet. The controversy on Ebola personal protective equipment (PPE), particularly face masks, which was hotly debated and still remains a divisive issue, provides an example of potential ethical problems on blogs. The main controversy was about use of masks or respirators, with the Centers for Disease Control and Prevention (CDC) changing its recommendation in October 2014 from the former to the latter after the infection of two nurses in the United States (MacIntyre et al. 2014). At the height of the epidemic and PPE controversy, bloggers with credentials in laboratory science but no clinical background and no relevant research expertise in PPE were offering definitive statements and “advice” on PPE. Their established social media profiles and followings as generic “experts” therefore have the potential to mislead generalists and lay people about their credentials on the topic at hand. Research shows that respirators provide better protection than masks for health workers, even when most of the pathogens identified are not spread by the airborne route (MacIntyre et al. 2011; MacIntyre et al. 2013), yet many bloggers positioned themselves as authoritative experts despite lacking any relevant expertise in the area. One blogger with a large following trivialized the need for respirators for health workers, even going as far as to say respirators were a “bad idea.” The blogger (not a medical practitioner and not a researcher in PPE) qualified this by stating that the blogger was not giving medical advice, but was free to write whatever he or she wished on his or her own blog. The ethical problem is that in the time of an unfolding crisis, where individuals, services, and systems are facing situations they have not previously encountered, pseudo-expert advice can potentially be mistaken for fact and followed, resulting in harm to patients. Regardless of whether the advice on blogs is right or wrong, it is unethical for public advice on medical practice to be given by those without relevant expertise. Misleading, dangerous, and unethical information is as dangerous online as it is face to face. Social media have been shown to comprise a useful, immediate, and effective source of information at times of disasters, but this source comes with responsibility and ethical obligations. In-depth analyses of the potential risks of social media in medicine and its governance remain unexplored. The practice of clinical medicine and medical research are governed and regulated within strict frameworks, but mass media and the Internet are largely unregulated, yet can impact on patient care. Many countries have social media policies for medical practitioners, and those who breach patient privacy or other aspects of medical ethics on the Internet will face disciplinary action and potentially severe consequences (Australian Health Practitioner Regulation Agency 2014). In contrast, the Ebola epidemic as played out on the

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Internet has resulted in major breaches of privacy and other ethically questionable practices, with little or no mechanism for oversight or accountability. The existing frameworks for such oversight are in specific countries, institutions, or organizations, and their jurisdiction rarely extends to global oversight. The rapid acceleration of information technology and social media, and their use in medicine as illustrated by the Ebola epidemic, highlight the need for a coherent international framework for governance of medical ethics in media. Such a framework should be focused on adherence to ethical principles in medicine and accountability of social media. &

REFERENCES Australian Health Practitioner Regulation Agency. 2014. Social media policy for registered health practitioners. Available at: www. medicalboard.gov.au/documents/default.aspx?record DWD14%2f13327&dbidDAP&chksumDPvNCit4JNxlpCjqOenrKv Q%3d%3d (accessed January 15, 2015). Fink, S. 2013. Five days at memorial. New York, NY: Crown. Hanauske-Abel, H. M. 1996. Not a slippery slope or sudden subversion: German medicine and National Socialism in 1933. British Medical Journal 313(7070): 1453–1463. Available at: http://dx.doi. org/10.1136/bmj.313.7070.1453 Houston, J. B., J. Hawthorne, M. F. Perreault, et al. 2015. Social media and disasters: A functional framework for social media use in disaster planning, response, and research. Disasters 39(1): 1–22. Available at: http://dx.doi.org/10.1111/disa.12092 Lifton, R. J. 2000. The Nazi doctors: Medical killing and the psychology of genocide. New York, NY: Basic Books. MacIntyre, C. R., A. A. Chughtai, H. Seale, G. A. Richards and P. M. Davidson. 2014. Uncertainty, risk analysis and change for Ebola personal protective equipment guidelines. International Journal of Nursing Studies. 2014 Dec 18. pii: S0020-7489(14)00331-9. doi: 10.1016/j.ijnurstu.2014.12.001. [Epub ahead of print]. Available at: http://www.journalofnursingstudies.com/article/S0020-7489(14) 00331-9/fulltext MacIntyre, C. R., Q. Wang, S. Cauchemez, et al. 2011. A cluster randomized clinical trial comparing fit-tested and non-fit-tested N95 respirators to medical masks to prevent respiratory virus infection in health care workers. Influenza and Other Respiratory Viruses 5(3): 170–179. Available at: http://dx.doi.org/10.1111/ j.1750-2659.2011.00198.x MacIntyre, C. R., Q. Wang, H. Seale, et aql. 2013. A randomized clinical trial of three options for N95 respirators and medical masks in health workers. American Journal of Respiratory and Critical Care Medicine 187(9): 960–966. Available at: http://dx.doi.org/ 10.1164/rccm.201207-1164OC Mark, M. 2014 Fear and ignorance as Ebola ’out of control’ in parts of West Africa. The Guardian, July 4. Available at: http://www.the guardian.com/world/2014/jul/02/-sp-ebola-out-of-control-westafrica (accessed 15 January 2015). Travaglia, J. F., C. Hughes, and J. Braithwaite 2011. Learning from disasters to improve patient safety: Applying the

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generic disaster pathway to health system errors. BMJ Quality & Safety 20(1): 1–8. Available at: http://dx.doi.org/10.1136/ bmjqs.2009.038885 Vibe Ghana. 2015. Over 800 health workers infected with ebola. Vibeghana.com.. Available at: http://vibeghana.com/2015/02/19/ over-800-health-workers-infected-with-ebola/ Vogel, G. 2014. Ebola’s heavy toll on study authors. ScienceInsider, August 28. Available at: http://news.sciencemag.org/health/

2014/08/ebolas-heavy-toll-study-authors (accessed 29 August 2014). World Bank 2014. Countries data 2014. Available at: http://data. worldbank.org/country (accessed 29 August 2014). World Medical Association. 2013. World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects. Journal of the American Medical Association 310(20): 2191. Available at: http://dx.doi.org/10.1001/jama.2013.281053

Everyday Ethics and Ebola: Planning for the Unlikely Carla C. Keirns, Stony Brook University The 2014 Ebola epidemic in West Africa has again highlighted the inadequacies of health systems in both developed and developing countries, and the difficulties facing public health systems around the world in responding to highly contagious diseases. While doctors and nurses in Africa continue to face inadequate supplies and staff, hospitals in the United States and Europe have struggled with what resources to dedicate to preparing for treating patients with Ebola when the vast majority of such facilities will never see a case. Over the past 12 months, national and international health agencies and ministries have been fighting an unprecedented outbreak of Ebola virus disease in the West African countries of Guinea, Liberia, and Sierra Leone, which suffer from weak health infrastructure due to long histories of colonialism, underdevelopment, and civil war (Farmer 2014). Most of the ethics literature that has been published on Ebola specifically addresses guidance for experimental treatments (including in this issue Caplan, Plunkett, and Levin 2015; Shah, Wendler, and Danis 2015) or the obligations of others to assist in West Africa (Rid and Emanuel 2014), rather than issues of risk, benefit, triage, and scarcity in clinical care of patients with Ebola in the United States (Gostin et al. 2014). Rosoff (2015) and Shannon (2015) in this issue are notable exceptions. Many U.S. and European hospitals have recognized physical barriers to rigorous isolation that were not considered when their facilities were planned and built predominantly for the acute care of noncontagious diseases, surgery, and obstetrics. These issues are raised at all levels of the continuum of care. Many communities in the United States are served primarily or exclusively with volunteer ambulance units staffed by emergency medical

technicians, whose units and staff will vary in equipment, training, and experience. After identification and isolation of patients at risk, the most difficult choices may occur at the next step, testing for Ebola virus and consideration of other diagnostic possibilities. In a clear-cut case with classic symptoms and a compatible travel history, the critical steps will be protecting other patients and staff from exposure, rapid confirmatory testing, and supportive treatments. The medical and ethical challenge is heightened when other diseases need to be considered. A baby under 1 year old who has come with his parents from one of the affected countries, who has a fever, and whose family members show no symptoms should be evaluated for other causes of fever in an infant. Depending on the baby’s age and exposure history, this would typically include ear infections, pneumonia, urinary-tract infection, meningitis, and other viral illnesses. But this is not a decision to be made lightly, as many treatments carry considerable risk. A baby with possible meningitis that cannot be ruled in or out because a cerebrospinal fluid (CSF) white count cannot be obtained might thereby be committed to 3 weeks of intravenous antibiotics, some of which present a high risk of renal failure, hearing loss, or other complications. A baby recently arrived from West Africa should also be evaluated for malaria, and some have argued empirically treated, as the condition is more common than EVD and remains a common cause of death. If the Ebola virus polymerase chain reaction (PCR) can be run on site and an answer obtained within a few hours, it may be possible to wait to test or treat for other conditions. If the Ebola test has to be sent off-site, however, it would become imperative to test or treat for life-threatening alternative diagnoses such as meningitis.

Address correspondence to Carla C. Keirns, MD, PhD, MSc, FACP, Stony Brook University, Center for Medical Humanities, HSC Level 3, Room 80 Stony Brook, NY 11794-8335, USA. E-mail: [email protected]

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Heightened vulnerability, reduced oversight, and ethical breaches on the Internet in the West African Ebola epidemic.

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