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esearch
of his concern for people who will develop cancer, because of an
encouter with this disease in his family. Jonathan felt betrayed by
the biobanking program because his data and samples were to be
used for research into an infectious disease, in spite of the fact that
his consent was limited to participation in cancer research. Other
people who enrolled in the same biobanking project may have different
motivations, for example, to advance research and diminish
human suffering in general or to contribute to knowledge that will
help citizens of the country. Participants with such wide altruistic
motivation would not likely object to their data and material being
used to combat a serious infectious disease. In fact, some of those
participants could feel betrayed if the ReB did not allow access to
their data and tissues, thus missing the opportunity to diminish human
suffering and death through research. It also was most likely
not participants who explicitly decided to restrict the use of their
material for cancer research, but the biobank that inserted this restriction
into the consent form. If a participant wished to restrict the
use of data and samples to a certain type of research, this restriction
needs the utmost respect. Empirical data suggest, however, that
most participants providing biological samples for research are not
very concerned with which disease will be subject of the research. 2
The REB decision
There are good arguments on both sides of this dilemma. It could be argued
that the ReB was justified in the decision to give the researcher the access
without consent of participants, because of the serious and urgent nature of
the research, which, if successful, would bring major benefit during this outbreak
of a serious infectious disease. The fact previous evidence suggests that
most participants in cancer research biobanks, if contacted, would permit the
use of their materials for the new purpose also supports the decision. Finally,
it could be asserted that the infringement on the autonomy of participants
is minor unless they specifically forbid the use of their material for research
into infectious diseases or any other non-cancer diseases.
On the other hand, it could be argued that ignoring the purpose of the original
consent (cancer research only) would be demonstrating grave disrespect for
persons participating in the biobank trust in the ReB system, and research
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