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Data Sharing in a Humanitarian Organization: the Experience of Médecins Sans Frontières


DOI: 10.1371/journal.pmed.1001562

Karunakara, Unni. “Data Sharing in a Humanitarian Organization: the Experience of Médecins Sans Frontières.” PLoS Medicine 10.12 (2013): e1001562. Web.

p.1: The MSF policy builds on the principles of ethical, equitable, and efficient data sharing to include aspects relevant for an international humanitarian organization, in particular concerning highly sensitive data (non-maleficence), benefit sharing (social benefit), and intellectual property (open access). -- Highlighted mar 12, 2014

p.1: MSF recognizes its responsibility to share and disseminate this knowledge. As a first step in meeting this responsibility, MSF established an institutional repository for its research publications (http://fieldresearch.msf.org/msf/) in 2008, and more recently has introduced a scientific publication policy that prioritizes open access, and is working on a policy for online sharing of research protocols. -- Highlighted mar 12, 2014

Principles Developed for the MSF Data Sharing Policy

p.2: Non-maleficence. MSF projects are often located where there is political or ethnic violence, or where certain disease diagnoses are associated with government restrictions or potentially dangerous consequences. The overriding imperative for MSF is to ensure that patients are not harmed or compromised. Thus, caution is needed when handling potentially sensitive data. Sensitive data are defined as any subset of information that can be misused against the interests of the individuals whose data are included in the dataset or against MSF, or that put either individuals or MSF at risk for political, financial, or other reasons (Box 3). In determining the eligibility of datasets for sharing, MSF must consider their potential sensitivity and ensure that appropriate safeguards are in place. Should safeguards not be appropriate or sufficient, MSF may decide that datasets are not be eligible for sharing. -- Highlighted mar 12, 2014

p.2: Social benefit. MSF will prioritize data sharing requests that are of benefit to the local communities where the data were collected, as well as to patients and communities similar to those in which MSF works, in particular marginalized or neglected populations. Notwithstanding this, there is a recognition that benefit sharing can be with a wider community of individuals, and will not always result in benefits to the local community. -- Highlighted mar 12, 2014

p.2: Open access. In 1999, MSF launched the Access Campaign to push for access to, and the development of, medicines, diagnostic tests, and vaccines for patients in MSF programs and beyond. Research developed as a result of data shared by MSF should remain consistent with such aims, with results and end products being accessible (and affordable) in lowand middle-income countries. In light of the potential public health benefits of releasing results immediately and without restrictions, publication of results should be consistent with the MSF scientific publishing policy, which prioritizes open access. Access to MSF datasets will be granted only if the recipients of data agree not to seek intellectual property rights of any kind, without MSF giving specific and prior consent. In addition, recipients must avoid actions that render the results of their research, such as publications or medical products, unavailable or unaffordable for the populations of lowand middle-income countries. -- Highlighted mar 12, 2014

p.2: Where personal data are included in a dataset, ethical review is required. -- Highlighted mar 12, 2014

p.2: Use of data outside of original consent will always require ethical review. -- Highlighted mar 12, 2014

p.3: Ethics: MSF data sharing will abide by the following ethical principles:

  • Medical confidentiality is fully respected.
  • The privacy and dignity of individuals and communities are not jeopardized.
  • Collaborative partnerships are undertaken in line with MSF’s Ethical Framework for Medical Research; recipients of MSF datasets will engage, wherever possible, with the local research community and the local community where the MSF dataset originates. -- Highlighted mar 12, 2014

p.4: Data considered sensitive by MSF:

  1. Any data from which an implication of criminal conduct could be drawn and/or that can put MSF patients or research participants at serious risk (including death). This includes data on violence-related medical activities, particularly, but not exclusively, in contexts of conflicts: (1) any data related to violence—such as bullet wounds—and (2) any data related to sexual violence.
  2. Data collected from MSF activities in prisons or any situation that are related to or can result in detention or deprivation of liberty (including in certain refugee or displaced person settings).
  3. Certain data variables such as those that could indirectly imply, truly or not, racial or ethnic origin, or political or religious opinions (for example, the origin or the location of the patient/participant).
  4. Data related to sicknesses with an obligation to adhere to treatment.

Data considered potentially sensitive by MSF (non-exhaustive):

  1. Data that can put patients/participants at risk of stigma, discrimination, or criminal sanction (including, in certain countries or populations, HIV and tuberculosis data).
  2. Data on sicknesses or epidemic outbreaks.

-- Highlighted mar 12, 2014

p.4: Preserving and protecting data from corruption or obsolescence of software is a serious concern with open data and data sharing. Digital Science offers a research data archiving service via Figshare and notes the safeguards needed to ensure the preservation and security of data [19]. As the MSF data sharing database grows, data preservation may require innovative thinking to ensure its security. -- Highlighted mar 12, 2014