Ethics and Ebola Webinar

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Ethics and Ebola Webinar

good afternoon I am Hilary wick a buyers and I’m the communications director for the Presidential Commission for the study of bioethical issues thanks for joining us today for ethics and Ebola public health planning and response I have a couple of housekeeping items to go over before we begin our discussion the bioethics commission’s report ethics and Ebola can be found on our website at bioethics gov and a recording of this webinar will also be available on our website within the next 24 hours we will be taking questions at the end of the presentations throughout the webinar you can submit your questions using the chat feature in the lower corner of the screen with your question please include your name and organization if applicable if you have any technical issues or questions please submit those to chairperson in that same chat feature with that I would like to turn it over to the executive director of the bioethics Commission dr. Lisa M Lea dr Lea the floor is yours Thank You Hillary and welcome everyone on the screen is an outline of what we’ll cover in the next hour as Hillary mentioned we’ll begin with our presentations and then take your question my colleagues and I are going to talk in some detail about a report from the Presidential Commission for the study of bioethical issues released in late February the report addresses several important ethical dimensions of the 2014-2015 Ebola outbreak in western Africa title of the report ethics and a bola public health planning and response foreshadows the Commission’s emphasis on the importance of integrating ethical preparedness into our planning for and response to future public health emergencies I’m not going to dwell on the numbers here but just for a brief reminder about the basic parameters of this epidemic this graph is from the most recent w-h-o sitrep or situation report notable here are the over 27,000 confirmed probable and suspected Ebola virus disease or EVD cases and the over 11,000 deaths the epidemic is waning with Liberia declared ebola-free on May 9 however this is not the case in Sierra Leone and Guinea where cases have risen over the past few reporting periods in addition we must remain mindful of the long-term negative impacts of this epidemic impacts to economies and governments to healthcare infrastructure and other public health problems that have been exacerbated by the redirection of funds to EVD communities and families including a rise in the number of orphaned children and to EVD survivors themselves who can suffer long-term medical and social consequences of their illness the context in which this academic occurred was an important driver for the bioethics commission’s engagement with the topic the sheer devastation of the epidemic in countries with very fragile economies political systems health infrastructure this was an important consideration the response to the epidemic revealed major weaknesses in international national and local public health infrastructure including our own with implications that are far beyond this epidemic high level of US public and political attention and anxiety to the real and perceived threats of the case of coming on to our shores particularly at certain points in this epidemic and consideration and implementation of public health interventions such as travel bans as well as research involving complex ethical considerations finally the American public after a period of vitally excuse me virtually no knowledge of or interest in the epidemic raging in western Africa in a highly publicized and vigorous debate on the ethical and moral dimensions of the disease when two American missionaries were medically evacuated to the US let’s step back for a moment and take a look at how prominent values were and continue to be in how we as a nation respond to this epidemic and it’s aftermath one area of the bioethics Commission’s analysis

was the ethical use of restrictive public health measures such as quarantine particularly as those as they related to the West African and US health care workers undoubtedly you are all familiar with kaci Hickox the nurse who worked with Doctors Without Borders in West Africa despite not having Ebola or any symptoms of EBD Hickox with quarantine for three days in a tent outside the Newark International Airport on return to her home in Maine she was ordered to remain quarantine for 21 days after her last contact with patients the potential implications of unsupported fear-based responses to global public health crises were highlighted by speakers in the Commission’s February meeting here you see a quotation from Patricia henwood an emergency physician and the director of global health initiatives at Penn Medical School he’s done several tours in Liberia with the International Medical Corps and she said at times it felt more challenging to actually coordinate our return to the United States than to do our bola weight related work in West Africa returning home means not only managing risk but also managing the perception of risks on an hourly basis even though we are asymptomatic many of us choose to limit it or no family during that 21-day period this is not due to fear of making them sick but rather public perceptions we’re concerned that our sibling spouse parent or child will be sent home from work or school because they have visited with us in fact that’s why I returned to the United States after my large family’s Thanksgiving celebration it’s important to underscore that these types of responses and concerns were not unique to the United States draconian restrictive measures such as cordon sanitaire occurred in West Africa many countries imposed travel bans another concerning response was what scholars call other rings epidemics from the plague in the Middle Ages to HIV SARS h1n1 in our time have brought out racist xenophobic and stigmatizing attitudes toward the other mercy Roberts professor of law civil rights and the director of the program on race science and society at the University of Pennsylvania spoke eloquently to the bioethics Commission about these underlying issues she says the concept of racial disease combined with stereotypes about black bodies helped to construct the Ebola as a black disease that was especially frightening because it’s so contagious contaminating and uncontainable perhaps the two words Americans associated Ebola with the most were Africa and fear granted Ebola is contagious and often lethal but the extent to which fear outweighed the scientific evidence of risk was determined by racial disease concepts stereotypes and assumptions one of the consequences of other is stigma and discrimination communities that were perceived to be associated with Ebola faced stigma and discrimination here in the United States as well Arisa best min Yates president of the Staten Island Liberian community association spoke to the bioethics Commission about how attitudes about the epidemic were affecting her community when a bola hit us we were targeted by our neighbors people pulled away from you because of your accent and so I had to get in the street and try to tell people no this is not what it’s like you just don’t you don’t just contract a virus because the person has an African accent or because you they are from that part of the country or the world I was on the street when a guy saw me and said take yourself back to Africa with your Ebola virus so we had to come out with a statement I am an African I’m not a virus I’m a Liberian I’m not a virus values are also reflected in what we pay attention to neglect the neglected tropical disease expert Peter Hotez described the Public Health implications of such selective attention that Ebola is really 3.0 of what we’ve been seeing for the last 50 years this is not the first time we’ve seen massive disease rise out of conflict we saw it with sleeping sickness in Angola and the DRC where 300,000 people died every year for more than a decade but it went on seeing because there were no journalists there when you see an area of extreme conflict it’s important to recognize that a horrific infectious disease or tropical disease outbreak will surely follow

finally our values are reflected in heroic acts public health professionals do not routinely get the most high-profile recognition certainly US public health officials have contributed to the response of the EVD epidemic but the impact on health care workers from affected countries has been devastating the Commission like many others was greatly affected by the work and the death of dr. Cheikh mark on his deaths from EBD was tragic not only because he was a global expert on viral hemorrhagic fevers the chief of the loss of fever unit at Kenema hospital in sierra leone and a leader in his community in his country’s fight against the Ebola epidemic but he was this great leader was the death of this great leader was demoralizing those fighting for the health of their country health care workers are considerably more vulnerable to contracting Ebola and when they fall to the disease it’s even more tragic as health care workers are scarce in these contexts state a total of 869 confirmed health care worker infections have been reported in Guinea Sierra Leone and Liberia 507 of whom have died so this was a somewhat atypical project for the bioethics Commission the Commission’s process is to consider issues over an extended period while hearing from experts and the public in addition it meets quarterly and federal rules require to advance notice to the proceedings so the bioethics Commission is not a body designed to respond quickly with ethical advice on an emergent or unfolding event by but an urgent circumstance demanded an urgent response and though the bioethics Commission recognized it might not be the ideal body it considered the need great enough to take on the topic specifically given the public debate and concerns there was a need for open public discussion of the issues and the ethical analysis in general and to weigh in on some of the topics of particular controversy fact that there was not another body to do this also informed its considerations of ethical preparedness for future public health emergencies Commission has addressed public health issues and although a global focus is not unprecedented the primary focus of the Commission in the US has been u.s. perspectives and policies before I hand things over to my colleagues to describe what the bioethics Commission recommended in ethics and Ebola I think it’s important to know a little bit about who the bioethics Commission is and why such a body would take on a topic like this established by executive order in 2009 shown here the bioethics Commission advises the president on bioethical issues arising from advances in biomedicine science and technology and seeks to identify and promote policies and practices that ensure scientific research health care delivery and technological innovation are conducted in a socially and ethically responsible manner this Commission continues the nearly 40-year history of similar groups established by the President or Congress to provide advice on bioethical issues reflecting the charge in that executive order the bioethics Commission is composed of leading experts in medicine science ethics religion and engineering the Commission is chaired by dr. Amy Gutmann a political philosopher and the president of the University of Pennsylvania we are vice-chair by dr. James Wagner an engineer and pres of Emory University in Atlanta since its inception inception in 2009 the bioethics Commission has taken on a wide variety of topics ranging from the benefits and risks of synthetic biology to privacy concerns raised by whole genome sequencing very current reports on the ethical issues in neuroscience you hear all the reports produced by the Commission thus far and while the reports are critical they’re just one facet recording and reflecting the Commission’s deliberations before releasing these reports the bioethics Commission meets in public hearing from experts and other stakeholders on a particular topic and deliberating what they might recommend they also solicit comment from the public through various means the Commission is committed to this kind of public deliberation as a method to consider issues of social and societal importance after the release of their report their work continues to live on in various ways through related scholarship dissemination to various audiences and the development of bioethics educational materials people sometimes wonder how topics are taken up

by the how topics taken up by the bioethics Commission are actually selected and there are two ways one is the President or his cabinet can make a request and the other is that the bioethics Commission itself can deem a topic or a question to be of sufficient national importance which is exactly what happened with the ethics and Ebola report unlike other bioethics commission’s reports and due to the urgent nature of this project our timeline was rapid over four months and in two meetings November of 2014 and February of 2015 the Commission heard from both the public through its request for information in the Federal Register and 16 speakers at its two meetings speakers represented many important perspectives including public health emergency response research ethics public health practitioners affected communities and a variety of historical sociological and legal perspectives as the bioethics Commission looked back on this outbreak its primary purpose in doing so was to glean lessons for future public health emergencies it’s forward-looking focus is what brings us here today want to emphasize that while the 2014 EVD epidemic is waning another public health emergency surely lurks as public health continues its planning we must integrate ethical preparedness and planning to ensure that we prepare not only for what we can do but also for what we should do I’ll turn things over now to my colleague katachi log will dive into the contents of the report Kutta thank you Lisa in my portion of the presentation I will address the overarching questions about US engagement in global public health action and ethical preparedness that framed the whole of the bioethics Commission’s analysis and recommendations in ethics and Ebola Lisa reminded us of the West African and United States context into which the bioethics Commission conducted its deliberations for ethics and Ebola one in which individuals families communities and countries were being devastated by an unprecedented epidemic to which many in the global community were slow to recognize and respond and which produced high levels of anxiety and public debate outside the most affected countries including and perhaps particularly in the United States both about how to respond to the unfolding tragedy in West Africa and how the epidemic and participation in responding to it might endanger the United States against this backdrop the bioethics Commission addressed two overarching questions what stake does the United States have in addressing public health problems outside its borders and what can ethical analysis and ethics integration contribute to public health preparedness as we all observed much of the discourse in the public sphere and by public health and other governmental officials about why the US should respond to the west-african epidemic in West Africa focused on security concerns on its threat to the United States while health security was and is an important rationale for responding to this and other global public health problems the bioethics Commission considered a range of justifications for action the bioethics Commission concluded that there are crucial ethical and Prudential reasons for u.s. engagement in global responses to public health emergencies these ethical and Prudential justifications are complementary and that they together reflect diverse US values and key aspects of public health professional excellence and each taken alone is incomplete in ways that can affect the effectiveness of public health policy and practice the ethical justifications are both humanitarian and justice based humanitarian arguments focus on the suffering and loss of life of others as a moral imperative grounded in common humanity regardless of nationality many if not most conceptions of professional excellence in public health include a commitment to social justice whether expressed in those terms or not and social justice as the Commission wrote entails commitment to sufficient levels of health and well-being and emphasizes the moral urgency of the health needs of the disadvantaged justice also calls attention to how health crises and the way they are responded to are shaped by often asymmetrical international relationships and arise and are exacerbated by inequities and wealth and

conditions of poverty and unrest theories of global justice can also entail obligations to respond to crises in part as redress for past or current and justices you would argue that the West African Ebola epidemic demands attention and response on both humanitarian and justice based grounds public officials distilled Prudential rationales in the often expressed the best way to prevent Ebola from coming to the United States is to address it at its source Prudential justifications are grounded in notions of self-interest or collective self-interest and reflect central tenets of public health practice and research such as reducing morbidity and mortality while the contagion associated with infectious diseases including Ebola sometimes more easily lends itself to health security concerns one form of Prudential justification responding to many global public health problems communicable and non-communicable epidemic and endemic are justified on Prudential grounds both because they contribute to and exacerbate epidemics like the one in West Africa and because they can destabilize government’s health systems and other aspects of society as dr. Larry Gaston of Georgetown Law School said in his November 2014 presentation to the bioethics Commission we must begin by acknowledging the sacred duties that all of us have in shared humanity but particularly high income countries to devote ourselves to alleviating suffering in another part of the world it is also in our self-interest because truly the only way that we can avoid risk in a modern globalized world is to reduce the reservoir of infection in West Africa considering the importance of both ethical and Prudential justifications for global Public Health action the Commission’s first recommendations in ethics on Ebola emphasize that the US government has a responsibility to engage in preparedness and to participate in coordinated global responses to public health emergencies given that the United States has clear ethical and Prudential reasons for global health action and in light of how the Ebola response was unfolding as they conducted their deliberations the bioethics Commission turned to how public health preparedness might be strengthened such as those ethical and Prudential objectives are best realized in relation to the ongoing Ebola epidemic and it’s aftermath as well as future public health emergencies in their second recommendation the bioethics Commission addressed international and US public health infrastructure underscoring the importance of strengthening the capacity of the World Health Organization calling for a single US health official accountable for all federal public health emergency response activities and strengthening the employment capabilities of the United States Public Health Service through streamlining the command structure and providing additional resources for ongoing emergency response training as we all observed during the height of the US attention anxiety about Ebola last fall public health officials faced considerable communications challenges and media coverage was overwhelming and often inflammatory the way those communications challenges were addressed shape public perceptions of risk influence public policy about how to respond to that actual and perceived risk including in relation to implementation of restrictive measures that is quarantined and affected those in the United States who are in fact most directly affected by Ebola including the West African diaspora returning health workers and the few persons who had Ebola virus disease in the United States thus the bioethics Commission made a recommendation emphasizing the responsibility of public health officials to support public education and communication about the nature of and justification for public health responses this recommendation highlighted the importance of particular attention to communicating with those most affected by public health policies and the importance of good communication and public education in mitigating stigma and discrimination which history and this Ebola albick have demonstrated are often associated with epidemics and the interventions intense for them in one moment sorry in their final overarching recommendation the bioethics Commission stress that attending to the ethical dimensions of public health emergency response is an essential component of public health preparedness integral to achieving public health objectives ranging from building the necessary trust for successful contact tracing to prioritizing clinical research with the greatest potential to have impacts in affected communities now

and in the future following this the Commission recommended ethical principles should be integrated into timely and agile Public Health decision making in order to make this happen public health expertise should be readily available in public health for public health policymakers practitioners and researchers and further the single public health official the bioethics Commission recommended be accountable for all domestic and international public health emergency response should also be accountable for ethics integration I now turn the presentation over to my colony colleague Manisha Sakuya thank you thank you cotta I will now focus on the bioethics Commission’s analysis and recommendations relating to restrictive measures and research during a public health emergency so against the backdrop of calls for and in some instances implementation of scientifically unsupported and extreme restrictive measures such as quarantine for asymptomatic persons and old measures such as cordon sanitaire the bioethics Commission took a detailed ethical and historical analysis to support its recommendation in relation to restrictive measures such as quarantine so first the harm principle is captured in the writing of John Stuart Mill he wrote the only purpose for which power can be rightfully exercised over any member of civilized community against his will is to prevent harm to others this quote emphasizes the fundamental importance of civil liberties including freedom of movement in contemporary terms and aligned with the language of public health the harm principle can be considered in terms of whether a restrictive measure is effective in preventing the public health problem in question and in certain public health frameworks is considered as the value of evidence-based action the principle of least infringement form the centrepiece of the bioethics Commission’s analysis even effectiveness it must be the case that no less intrusive measure would be equally effective at preventing the harm the emphasis here is on minimizing impingement on individual liberties the bioethics Commission also considered beneficence and non-maleficence these principles incorporate notions of proportionality which requires that the probable benefits of a restrictive measure are sufficient to justify any burdens including restriction of Liberty reciprocity calls attention to the fact that even when justified by a public health necessity restrictive measures can constitute a burden to members of the public it requires that those who bear such burdens are supported by society and through public agencies and policies this support might include things like health care education and compensation for lost income the principle of justice and fairness calls for respect for the rights and liberties of healthcare professionals and the rights of others who might have come into contact with someone with Ebola particular individuals and groups should not disproportionately bear the benefits and burdens of Public Health response socioeconomic conditions that make some groups more vulnerable both to public health problems and exploitation stigmatization and discrimination need to be taken into account public health officials are obliged to design interventions in ways that avoid exacerbating existing social and Justices additionally the bioethics Commission was informed by lessons from history paying particular attention to stigmatization of already marginalized groups for example the u.s. travel and immigration band of hiv-infected foreign national which was in place from the late 1980s until 2010 was a decision rooted in fear not scientific evidence using this analysis and lessons from history the bioethics Commission recommended that public officials use public health and scientific evidence to develop and implement scientific policies that lead to the least possible infringement these measures should be regularly reevaluated based on new scientific evidence and the rationale of any restrictive measures should be communicated clearly all these conditions must be met to justify the implementation of restrictive measures the bioethics Commission recognized that clinical research during a public health emergency is important especially in a case like Ebola for which there are currently no licensed and approved vaccines or treatments in epics and Ebola the bioethics Commission

considered ethical challenges in the design of clinical trials for preventive and treatment trial specifically randomized control trials a central ethical concern during this Ebola epidemic has been the use of control groups when testing experimental interventions some have argued that randomized control trials using the best available supportive care as a control for treatment trials are the most efficient and powerful method for assessing the safety and effectiveness of available experimental intervention others have argued that in this Ebola epidemic in which a high number of infected persons die from the disease everyone participating in a clinical trial should receive at least the possibility of the benefit from experimental intervention so the bioethics Commission discussed four considerations that can help to address the tension between these two perspectives vaccine trials or pharmacological prophylaxis trials and treatment trials are different in ethically relevant ways whereas participants in treatment trials are infected with the disease participants in vaccine trials are usually healthy they therefore don’t have an opportunity to benefit in the same way from participating in the trial and the risks and benefits are different for participants in each case next the bioethics Commission identified two important ethical considerations regarding the supportive care provided to participants in a treatment trial one case was how do we interpret best available best available supportive care might mean best possible supportive care requiring the most sophisticated intervention or it might mean the local de facto standard of care which is what’s available where the trial is occurring in addition the bioethics Commission recognized that determining the effectiveness of different levels of supportive care is itself an important topic for further clinical research third the bioethics Commission highlighted that for any clinical research it’s also ethically important to be responsive to the health needs of the host community and it’s important to address the concerns of the community about the design of clinical research finally the bioethics Commission emphasized the overriding ethical constraint for clinical research in all contexts is that the design of a trial must be adequate to yield results that are amenable to definitive scientific interpretation otherwise the risks to the research participants cannot be justified taking these considerations into account the bioethics Commission made a two-pronged recommendation the first prong recommends that clinical research provide the best supportive care that is sustainably available in the community in which research is conducted using the best supportive care available and sustainable in the community as a comparator for experimental interventions will help these communities be better prepared for future epidemics the second prong identifies three key goals for clinical trial design all clinical trials should be methodological equally rigorous and capable of generating results that are clearly interpreted they should be acceptable to the host communities and to the extent possible they should minimize delays to completing the research properly designed randomized control trials are generally best at meeting these conditions however when not feasible other trial designs should be considered as a means to address these goals during the bioethics Commission February 2015 meeting dr. Nancy cast from the Berman Institute of bioethics testified to the Commission regarding the debate over the use of control groups in clinical trials in emergency contacts like the Ebola epidemic she commented it’s the age-old tension of a randomized trial for on the one hand it’s in our ethical and human best interest have an efficient and valid treatment trial and this equally profoundly important need for us always to recognize that there are human beings behind this research who are sick and desperately want and deserve whatever we know to be helpful the bioethics Commission recognized that navigating this tension requires careful analysis of the range of possible trial designs coupled with a commitment to the core principles of research ethics in addition to clinical trial design the bioethics Commission also recognized the important contributions of the collection use and sharing of biospecimens might make first in better

understanding the Ebola virus and second in advancing research into preventive and therapeutic interventions for the disease however there are ethical and practical challenges in the collection use and sharing of Ebola biospecimens for example obtaining informed consent from persons with Ebola it’s particularly challenging since they might be incapacitated or they might be minors and they might be isolated from family members who can act as proxies additionally the ethical principle of respect for persons requires that adequate are in place to protect the privacy of individuals from whom Ebola biospecimens are collected these protections are particularly important given the stigma associated with Ebola sharing biospecimens and associated data raises additional concerns about equitable benefit sharing these concerns are motivated by reciprocity and justice and they imply that those who provide biological samples used in research should have access to the benefits that result from that research taking these considerations into account the bioethics Commission recommended that researchers and other stakeholders be ethically attuned to the challenges of collecting biospecimens during a public health emergency specifically the US government should ensure the ethical collection of biospecimens including addressing the challenges of obtaining informed consent and ensuring privacy protections the US government should also facilitate access to the research benefits to the broadest group possible by engaging in dialogue with global partners and collaborating with local scientists whenever possible the tragedy of the Western us the tragedy of the Western African Ebola epidemic would be compounded if we didn’t incorporate and act on the lessons it provides while there are many areas that merit attention we would like to conclude by addressing three areas of particular urgency within the remit of the bioethics Commission as we noted there is considerable activity in relation to reforming w-h-o so that it is better situated to respond to future crises even though clear weaknesses were revealed w-h-o has the credibility and convening power to take a global leadership role in responding to public health emergencies second ethics integration in public health is best achieved by increasing its prominence as a key feature of professional excellence in public health and by providing additional resources to consider and address the ethical dimensions of public health practice and reach we recognize that there are many individuals and groups already concerned with ethics and public health and that ethics integration is not easy and will not occur overnight this is why it’s critical to capitalize on the current global attention to the Ebola epidemic and the global public health attention more broadly in order to develop new practical ways to address ethical issues in public health that concludes our presentation I’m now going to turn it over to Hilary for the question and answer portion of the webinar thank you thanks so much Manisha and thank you all for your presentations let’s do open it up for questions now as a reminder you can submit questions using the chat feature in the lower corner of the screen please do include your name and organization if applicable now to get us started as those questions are just beginning to come in I’ll throw out a first question and Lisa I would like to direct this to you are the recommendations about Public Health and ethics preparedness only meant for w-h-o and US federal or national public health institutions well I think what we’re trying to get at with this question is what resources and advice do you have for state and local health departments about ethics preparedness Thank You Hilary that’s an excellent question and I think that the important thing to recall here is that we are taught the Commission recommended ethics integration throughout public health preparedness planning and that means not just the International and federal levels but also the Commission emphasize that integration is essential at all levels including state and local health departments nongovernmental organizations in all kinds of institutions everyone who is involved in a response and in the Ebola case we saw many organizations and people from a variety of sectors involved not just governmental so fundamentally the integration of ethics should be you know should occur in all organizations that that are involved in public health planning and I do think that you know the Ebola epidemic in West Africa demonstrated that preparing an

effective communication strategy that helps public health officials explain the motivations behind their decisions and policies at the time really help in these these ethically charged situations to reduce public anxiety and when we’re dealing with an emergency with fast changing information and a lot of political pressure it’s especially important to be prepared to justify public health actions from an ethical perspective thank you Lisa right out of your your answers there comes a comment from Joseph would ring and he writes having deployed to Liberia and Sierra Leone for the Ebola virus disease response he notes that the reactionary and sensationalized us and global media response far outweighed any frank discussion of the morbidity and mortality experienced by EBD ravaged West African countries he notes that there needs to be an international media response to responsibly educate non-medical people on Ebola virus disease or other infectious diseases and I wondered if you wanted to respond to that comment in light of some of the recommendations that the Commission has made about communication thank you very much for the comment I think it’s an excellent point and one that in throughout the Commission’s work especially its recent work in neuroscience and with ethics the Commission focused a number of recommendations on clear communication on evidence-based decision-making on being transparent about the ethical underpinnings of the decisions and in addition to that the importance in terms of ethical preparedness is to give the public a chance to talk about and deliberate and think about the kinds of interventions and the kinds of responses we would have to a potential emergency or in the case of Ebola or real emergency we just didn’t have the time to deliberate about that as a public and I think it’s really important as a theme throughout the Commission’s work that now hype is a problem we know hype is a problem both in terms of overestimating certain kinds of scientific findings and that hype pipeline so to speak that the Commission looked at in terms of neuroscience applies where when there are fearful responses and you know people are afraid and that certainly is the case in a public health emergency with something as deadly as the Ebola virus so the Commission would wholeheartedly agree that there needs to be a measured and evidence informed response to these types of situations and they really firmly believe that integrating the ethical preparedness is one productive Avenue to this kind of more measured and informed response thank you for that our next question comes from Leonard Ortman of the CDC and Cotta I’m going to direct this one to you he notes that many travel restrictions imposed by governments exceeded the least restrictive means standard in most cases as a result of fear or as a way to manage fear and he queries to what extent should the reduction of public anxiety be taken into account I think that that the public health effectiveness unlike the Commission would concur should be the the main criteria by which restrictive measures are implemented and in addition to who being very mindful of their some of the social implications indeed fear needs to be addressed through other means than the implementation of restrictiveness I echo echo Lisa’s comments about communication and and public education in terms of reducing fear so indeed fear is not an appropriate basis to mitigate public fear with restrictive measures but communication strategies can be used in some regard thanks for that our next question comes from Pierce Lee Stuart from Duke University and she writes much of the presentation today focused on public health planning preparedness do you or does the Commission have any recommendations on how to develop a case study related to these ethical issues related to Ebola that educators could use in the graduate and undergraduate classroom Lisa why don’t you field that one well I would almost venture to say

that was a planted question if I didn’t know that it weren’t because actually the Commission has embarked the Commission staff has embarked on a series of case studies that we’re developing and should we hope in the very short term to release those case studies for public health students public health professionals interested in in talking about integrating ethics ethical preparedness into our planning so stay tuned for those there are close to two being completed and we hope to post those soon we’ve heard from many public health officials since the release of the report that some very useful and contained case studies might be very helpful so we have embarked on that and hope to have those posted soon and I can addition to that just let me let me add for those of you who end up using those cases we would very much appreciate feedback on how useful they are and whether you have other ideas about how we can make those more useful for both traditional and non-traditional students thank you our next question is for Manisha and Manisha the question is how do we prepare to conduct research ethically in the next epidemic or other public health emergencies great things Hillary that that’s a great question so while it is hard for us to know ahead of time all of the details of a public health emergency on there are multiple ways that we can prepare in advance and these preparation methods can increase likelihood that research that’s conducted during an emergency will reflect the key tenants of research ethics so community engagement is it’s an important aspect of preparing to conduct research ethically on community engagement is also responsive to those affected by Public Health and it it’s largely a trust-building process it requires extensive knowledge about the research context and it also requires the careful building of relationship so so this happens over time it’s really a long-term commitment um it’s also important to have at least partly developed research protocols in advance this will help make research more timely it’ll help to fully attend to the ethical dimensions of research especially in emergency contacts for example we know that on informed consent presents certain ethical challenges in emergency settings settings that are characterized by urgency and sometimes characterised by desperation so there are there are often socio-cultural different differences and other differences between researchers and the communities in which research is being conducted so grappling with and operationalizing research design and procedures to address the ethical dimensions of informed consent in such settings takes time and it takes interdisciplinary expertise and often it requires social and behavioral research that that can proceed and run parallel to clinical studies um in addition to that this is Quetta I think that organizations like the World Health Organization and other National Public Health institution should really continue to take a global leadership role in thinking about other things that affect the ethics of research including research priorities and how that relates to the research and development pipeline a major feature of ethical research is making sure that that the research has value in the communities in which the research is being conducted and in relation to the the emergency at hand and timeliness is critical to that so both from the bottom up in terms of communities and and those relationships and thinking about institutions that have the potential to play a leadership role in thinking about these are important in facilitating timeliness great thanks very much our next question comes from Cheryl branch and this is a great question to build off of the topic about our educational resources here at the Commission she asks how can libraries support the goals related to bioethics and Ebola Lisa do you want to take a stab at that one thanks that’s a fantastic question and of course we welcome input and perspectives from from all disciplines including library science in terms of how we might be able to partner to encourage the both the scientific preparedness as well as the

ethical preparedness for these kinds of responses both of those things require literacy on the part of our public so we need a public who can interpret and consume scientific information and we need a public who so that they have scientific literacy we also need a public who are interested and can come to the table with with an ethical literacy and by that we mean that they’re able to think about what the ethical dimensions of a situation might be that’s not hard to do in your bola case because they’re so obvious but also that they’re able to articulate what concerns they have and bring to the table some ideas about how to resolve those concerns so libraries are a fantastic meeting place for science cafes for Essex cafes for using the kinds of materials that a public bioethics effort like the presidential bioethics Commission produces there have been numerous examples of successful public meetings around particular issues and and libraries play a critical role in that especially at the very local level we talked earlier about the importance not only of ethical preparedness not only at the international and national level but at the local levels where people in this example from the Ebola epidemic people returned home from working in these Ebola ravaged countries and they returned to their hometowns their their small towns their cities and their communities and their local health department you know have responsibilities and in responding to their return home and I think libraries at the very local level can really help facilitate some of the conversations to raise both scientific literacy as well as the ethical literacy thank you our next question comes from drew Barrett at the CDC and she asks do you have any recommendations about how to build Ethics capacity in state and local health departments or at the federal level at least I think this builds off of the very first question we asked sure that that’s a great question drew thanks I will say that certainly there there is a need to incorporate ethics education and ethics in development of ethical skills among students of public health very importantly there there’s a whole workforce of public health professionals who also need and want this kind of training and want to build these skills I know drew your program at CDC has has done a great deal of work in creating effective programs to help train the prevalent pool so to speak of public health providers we really do have to rely on schools of Public Health to incorporate ethics education throughout their their graduate degrees and this is a critical of critical importance because Public Health is getting more complicated not less as we saw from the Cibola epidemic that the number and types of players in a response is getting more disparate so we had not only the epidemic intelligence service that you know always shines in in cases of emergency and they did again in in the Ebola emergency but we also had NGOs and these you know corporations and churches and people from many different spheres and so that public health response brings all these various disciplines all of whom need some guidance around how to you know struggle with and how to resolve the ethical tensions that inevitably arise so in terms of ways to reach people of course the bioethics Commission has been producing educational materials which are all available for free and on our website we continue to update that as we create more materials I know that the American Public Health Association holds Verte which is supported by and taught by drew Barrett and folks at CDC some pre-meeting training on integrating public health ethics to decision-making on a daily basis for local public health providers so I think there are a lot of potential avenues to educate and train up so to speak public health professionals so they to have a level of ethical literacy that matches their their sessional low

literacy thank you and being mindful at the time here we have about three minutes left so let’s get to our this will be our last question we saw how can ethics help counter reactive implementation of restrictive measures when public anxiety is high in an emergency for example that’s an excellent question and I think we had a couple of others that that were related to this idea of how do we deal with the kind of reaction the fear reaction and and what is Public Health’s role in implementing measures to manage fear even if it’s not evidence-based right so I think some of the things that are really important about the work that the bioethics Commission did in this report is they really felt strongly that attention to the ethical dimensions of things like restrictive measures or other responses can help ensure that these measures meet and are refined in relation to appropriate standards of Public Health effectiveness and necessity in other words if the restrictive measure meets the public health goal we can talk about how that is an appropriate response and we can do that ahead of time if we integrate ethics preparedness the other thing that’s really important is when such restrictive measures meet public health goals we have to continue to talk about the likelihood that that there’s going to be attention paid to unintended consequences so people like we heard from the Commission heard from people who had you know a lie were harassed and and such because of stigma associated or the social harms associated so we have to be able to prepare for those kinds of reactions from the public and as Manisha outlined implementation of restricted measures really need to be guided by ethical principles with the centerpiece being this least infringement piece as well as the harm principle and justice etc I think finally just to sum up that public health officials have an ethical obligation to implement restrictive measures that are effective and then to communicate the justifications for those as well as attending to these key ethical principles that should guide their implementation so efforts in advance of a crisis are critical and education and public deliberation really reflect some important things for us to consider around these types of measures thank you all very much and that is all the time that we have today as a reminder the bioethics commission’s report ethics and Ebola can be found on our website at bioethics gov and a recording of this webinar will also be available on our website in the next 24 hours thanks very much for joining us today goodbye