M. Kate Grabowski,2,4 Francis Bajunirwe,5
Rhoda K. Wanyenze1
A growing number of government agencies, funding organizations, and publishers are endorsing the call for increased data sharing, especially in biomedical research, many with an ultimate goal of open data. Open
data is among the least restrictive forms
of data sharing, in contrast to managed
access mechanisms, which typically have
by the data generators themselves. But
despite an ethically sound rationale and
growing support for open data sharing in
many parts of the world, concerns remain,
particularly among researchers in low-
and middle-income countries (LMICs) in
Africa, Latin America, and parts of Asia
and the Middle East that comprise the
Global South. Drawing on our perspec-
tive as researchers and ethicists working
in the Global South, we see opportunities
to improve community engagement, raise
awareness, and build capacity, all toward
improving research and data sharing in-
volving researchers in LMICs.
The Scholarly Publishing and Academic
Resource Coalition defines open data as being “freely available on the internet permit-ting any user to download, copy, analyze…
without financial, legal or technical barriers
other than those inseparable from gaining
access to the internet itself.” Many of the
broad challenges surrounding data sharing
are not entirely new. Such challenges have
been explored within the context of social,
policy, and research norms of the time, resulting in approaches to equitable international collaborations involving researchers
in LMICs, including data sharing standards
through managed access that helped ensure
appropriate recognition. But more recently,
as a result of changing technology that has
made data collection, storage, and sharing
more feasible, along with changing social
and research norms driving toward openness and sharing, this prior equilibrium has
been disturbed, with equitable collaboration less easily assured.
Although it is arguable that most obsta-
cles to open data sharing are not exclusive
to the Global South, stark resource inequi-
ties and, in some cases, histories of colonial
oppression, present a markedly different
landscape, often characterized by limited
capacity and deep mistrust, for acceptance
and implementation of open data policies.
PARACHUTES AND FREE RIDERS
North-South research collaborations are
almost universally funded by Northern donors with upstream flow of specimens and
data from the South and rarely vice versa.
Open data effectively makes the resources
collected in one country freely available to
others. African scientists have expressed
concern that open data compromises national ownership and reopens the gates
for “parachute-research” (i.e., Northern
researchers absconding with data to their
home countries). Other LMIC researchers
have articulated fears over free-riding scientists using the data collected by others for
their own career advancement (1, 2).
Studies on data sharing among LMIC researchers have found that although they are
generally supportive of data sharing, there is
considerably less enthusiasm for open data.
There are concerns about data misuse, violations of patient privacy through participant
reidentification, and possible humiliation
and exploitation of the researchers themselves (3, 4). Lack of awareness and experience with data sharing outside of trusted
collaborations were also identified as obstacles to public data release (1).
Capacity building efforts, such as the National Institutes of Health (NIH) Fogarty
International Center, have done much to alleviate stereotypes of the parachute researcher
symbolic of Northern colonial science. Indeed, the Council for International Organizations of Medical Science ethical guidelines
for human research acknowledges an essential role for capacity development in ethical
international collaborations (5). However,
open data may jeopardize capacity building
in the absence of risk management. Research
data are used not only to advance science, but
also to train new investigators, increasing national autonomy and equity. It is inevitable
that open data sharing will give rise to scenarios where Southern investigators do not
publish all intended analyses from data sets
before investigators at more well-resourced
institutions in the North do so first. This is
because of disadvantages inherent to LMICs,
including poor digital literacy, inadequate
infrastructure, and minimal investment in
data science training. Additionally, many researchers in resource-poor settings have limited time to publish scientific manuscripts
because a disproportionate amount of energy
is spent on implementing studies and programs for Northern collaborators.
DATA AND DEVELOPMENT
Open data sharing and the
Global South—Who benefits?
Limited capacity, deep mistrust pose challenges to sharing
1Makerere University School of Public Health, Kampala,
Uganda. 2Rakai Health Sciences Program, Kalisizo, Uganda.
3Medical Research Council of Zimbabwe, Harare, Zimbab we.
4Department of Pathology, Johns Hopkins University,
Baltimore, MD, USA. 5Department of Community Health,
Mbarara University for Science and Technology, Mbarara,
Uganda. Email: firstname.lastname@example.org
A field researcher for INDEP TH collects data in the
village of Kokmua in Ghana, September 2007.