at the community level. 7 Community engagement involves interaction between emergency response workers and members of the affected communities.37 Community engagement gives researchers an opportunity to surveil the community and learn behaviors and customs and it helps the community be better prepared for future public health emergencies.38 Community engagement may describe a wide range of activities including “information delivery, consultation, collaboration in decision-making, empowering action in informal groups or formal partnerships[,] and in health care delivery and promotion.” 39,40 Traditional community engagement efforts involve community partnerships and community meetings, but community engagement has recently expanded to efforts with digital technologies and social media.41 After the outbreak was declared a public health emergency, researchers were met with barriers to a surveillance system implementation at the community level. 42 One reason for these barriers was the lack of community context and communication in regard to the proposed systems.43 One of the largest obstacles researchers met when dealing with West African communities was the misinformation spread about Ebola.40 In a survey conducted by the CDC, community members in Guinea and Sierra Leone hesitated to share relevant information because of the interruptions to customary practices around burial that would ensue. 3 Community burial customs led to a still-unknown number of “secret burials” in Guinea, Liberia, and Sierra Leone.44 In Guinea, mishandling of Ebola information resulted in regular violent resistance to surveillance and contact tracing activities. Emergency response workers assumed a level of homogeneity and hierarchy that hindered data collection and sharing. In the three most affected countries, there were sub-groups within communities as well as overlapping community identities. In one incident in the Guinea forestière, emergency response workers assumed village chiefs would be the most effective liaisons for communication and collection of information. 43 Later investigation revealed distrust of those chiefs as well as the identity of leaders with more legitimacy in the community.44 10 Similar barriers were encountered in Sierra Leone: One international epidemiologist in Sierra Leone said that he achieved more by paying community members to inform on sick people than he did by using the official system, which entailed fines for hiding patients or failing to report someone who was ill. He offered 150,000 leones for information and access to a family or community member, and another 100,000 leones if the person tested positive for Ebola.57 c. Patient confidentiality and informed consent Where Ebola treatment centres were established (in both rural areas as well as in and around larger cities) and in the context of formalized healthcare facilities like hospitals, the treatment of Ebola patients involved the limitations that patient confidentiality and informed consent pose for biomedical and clinical researchers. In the case of Ebola, these matters became even more relevant given that individual treatment and the public health response were intertwined - sequencing of the Ebola virus strain enabled researchers to trace the outbreak’s origin and pattern of transmission.56 Because people exposed to Ebola showed phenotypic variability in susceptibility to infection and disease severity, human genetic variation likely contributed to individual immunity and infectivity. 33 Genomic research would not be possible without the collection and sharing of human genomic data.33 In the three most affected countries, genomic data was in some cases collected and labeled with a patient’s identifiable information (name, age, sex, etc.).33 Data could then be theoretically de-identified, but all mechanisms for protecting sensitive health data were rudimentary (e.g. locked file cabinets) or non-existent. MSF for example, which holds significant data collected and analysed during the outbreak, limits access to data related to sensitive data, contacts or MoUs signed by MSF or the custodian with third parties and by the scope of formal consent. The sensitivity of data collected from patients posed a dilemma for researchers: obtain informed consent and respect confidentiality according to ethical guidelines or facilitate data sharing for purposes of response. 28 Concern over the confidentiality of data about individuals was the single most consistently cited barrier to data sharing.14 These concerns led many researchers to hesitate or refuse to sharing data that might compromise patient confidentiality. 29 In the Ebola context, researchers saw firsthand the discrimination faced by both infected persons and survivors, as well as their families.28 The Liberian Ministry of Health, for example, mandated that no names be released and no bodies photographed. Informed consent procedures posed similar delays and dilemmas for data sharing. 14 Indeed, some early genomic analyses admitted that informed consent had not been obtained.58 There were widespread ambiguities as to whether patients had to consent to secondary or other downstream uses of their data. 14 Repeat consent delayed further research and exposed patients to additional risk of stigmatization. 14 Many patients were incapacitated and/or