PoPulationand Public HealtH etHics

Case
The Canadian government has recently declared a public health emergency
following the propagation of a mutated strain of the Ebola virus.
Every province in the country is striving to provide the necessary care to
individuals affected by the latest strand of the virus and the same level
of intense activity is seen in the research setting. In Manitoba, research
has focused mainly on small groups of people considered most at risk of
developing serious symptoms related to the new Ebola virus. To prevent
future outbreaks, however, many researchers in the province believe it is
necessary to undertake a larger study of genetic factors contributing to
the development of severe symptoms. Only a study involving thousands
of subjects could identify any genetic factors involved in this propagation,
but no resource of this size is currently available for research on the new
Ebola virus. Moreover, setting up a biobanking project specific to the Ebola
virus would require a considerable amount of both time and funds before
it could be effective and usable by medical researchers. This insufficiency
is prompting several researchers to request access to biological materials
and genetic information already stored in various pre-existing population
biobanks for use as control groups.
The university’s ReB has received one such request. After a long debate, its
full membership decided to authorize a Canadian researcher to access the data
and samples collected by the PreHealth Project. The declared public health
emergency led the ReB members to decide that the proposed research is essential
and that the infringement to the participants’ consent — that their
data and samples only be used for cancer research — was justified in these
exceptional circumstances. In normal circumstances, participants would have
had to re-consent for such secondary use of their data and samples.
On Jonathan’s return to the country, he learned through local media that
PreHealth’s data and samples will be used for studies on the mutated strain
of the Ebola virus. He felt concerned that his samples would be used for a
purpose other than that he was informed of during the consent process. He
also feels a bit betrayed by the project he so eagerly participated in on altruistic
grounds. Jonathan decides to complain to the Faculty of Medicine of the
university in question, and is contemplating legal action for improper use of
his data and samples.
To Share or Not to Share?
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