public health data sharing globally.99 Critics note that much data sharing only
comes in response to a public health emergency rather than creating
“enduring systems or cultures for sharing information” that others can readily
access if such an emergency reoccurs.100 Further, one reviewer noted that
often there is no plan on what to do with data collected or shared in an
emergency, which can raise ethical issues.101
Critics urged that such long-term systems focus more on ensuring that
countries can share data through “an internationally agreed framework”
rather than focusing on standardizing data.102 Some note that data
standardization requirements may be difficult and costly for low- and middle-
income countries to implement and might not be necessary for data exchange:
We thought, if all the countries could harmonize their disease surveillance
systems reporting could be enhanced, and then we quickly discovered each
of these countries, or most of them, already have pretty good systems in
place and we’re not going to replace them with the neighbouring
system . . . So we’re no longer trying to say countries should have the same
systems . . . but we want them to be able to communicate with each other
In other words, even if there are barriers to the direct exchange of data,
such increased communication—either among lower-income countries or
between them and high-income countries—has great value for public health
because low- and middle-income countries can learn from what worked and
what were costly failures elsewhere. Understanding some best practices
around how to collect and use data for public health purposes can help
countries anticipate and prepare for emergencies.
III. REGULATION OF HEALTH DATA: ARE COUNTRIES READY TO SHARE?
As the ways data can be gathered continue to evolve rapidly, technology
99. Jussi Sane & Michael Edelstein, Overcoming Barriers to Data Sharing in Public
Health: A Global Perspective, CHATHAM HOUSE 18 (2015).
100. GOLDACRE ET AL., supra note 67, at 15 (“Every time there’s a new outbreak and it’s
a new pathogen, then people that have never had to experience how you do this start learning
from the bottom up. . . and they end up making all the mistakes that we keep making of the
last 15 or 20 years.”).
101. Sane & Edelstein, supra note 99, at 17; see also Chretien et al., supra note 91, at 3
(discussing how researchers who included “Zika virus genome sequences in a public database
felt they were not credited appropriately when another group used those sequences for a paper
published 2 weeks later.”).
102. GOLDACRE ET AL., supra note 67, at 16 (“There really is a need for some move
towards a global consensus on governance of data sharing so that various players, not only the
public, but certainly even the researchers who collect the data in the first place are protected
and fairly treated.”).
103. Sane & Edelstein, supra note 99, at 7.