The Ebola 100 Project frequently receives questions. If you don't find your answered below, please contact us and we will get back to you right away.


How is the Ebola 100 Project going to make its data open and accessible in perpetuity?

 

How did the Ebola 100 Project address the issue of IRB/Human Subjects Research Ethics?

 

 

 

I want to participate in the Ebola 100 Project. Will my information be kept confidential? 

The Ebola 100 Project is in the process of negotiating an open access data arrangement with the Center for the History of Medicine at Harvard Medical School's Countway Library of Medicine and Dataverse. Users seeking access to data will have to agree to certain conditions of data usage, including non-utilization for commercial or unethical purposes. Data will be shared through digitized file formats.

The Ebola 100 Project has been a large multi-actor initiative that has had to engage a range of mechanisms to obtain IRB approval in many research locations, including the United States (University of Florida, Western IRB, Yale University), Canada (Dalhousie University), Sierra Leone, Liberia, France (Institut Pasteur), and Guinea. All project applications classified Ebola 100 Project data as "oral history" data. As a result, consistent with conventions regarding "oral history" research, exemptions from IRB research review were sought and obtained.

 

Yes. At the outset of our project in 2015, we extended to participants the opportunity to choose the standard of confidentiality that they wanted to see applied to their interviews.

However, with the richness of the interviews came concerns by our steering committee that participants views and experiences might require shielding from public scrutiny. We determined that we should apply a uniform standard of confidentiality to all of our interview transcripts. (Note: some interviewees requested complete anonymity; their identifying details have been purged in all documentation from the outset of the project.) with the exception of interviewees who required complete anonymity. 

Following standard ethics conventions, details that are removed include: 

  • Name
  • Addresses
  • Employer's name or address
  • Relatives' names or addresses
  • Dates (e.g., birthdate, date of death, etc.)
  • Phone / fax numbers
  • E-mail addresses

Identifying data will be released from a "dark archive" for the purpose of historical and archival research in 80 years, after relevant data no longer poses a risk to our subjects.


I want to use data from the Ebola 100 Project in my research. How do I cite it?

Once the Ebola 100 Project has been made public, all publications should use the following citation information for the project:

Ebola 100 Project. (year). Interview #. archive source. website location.


I want to access information about the organizations and individuals who contributed to the Ebola 100 Project. How can I access it?

Information about the institutional and individual contributors the Ebola 100 Project can be found here.

Identifying information about the individuals and organizations who contributed as interviewees to the Ebola 100 project is unavailable due to confidentiality restrictions.