PoPulationand Public HealtH etHics

esearch
Many different parties have an interest in this case. They include: the ReB
and the population of the country, which has a primary obligation to safeguard
and protect the interests of participants and is ultimately accountable
to the comunity served; the complainant, Jonathan Bleau, who participated
in the biobank for cancer research and is opposed to the decision of the
ReB; other participants in the biobank, whose positions and preferences in
this situation are unknown; a researcher in infectious diseases who feels
that a rapid access to materials in the biobank would give him or her the
best opportunity to contribute to the control of the infection that resulted
in the public emergency; the university with which the biobank is affiliated
and that supports the ReB; population of the country, which is facing
a newly emerging and serious infectious disease. In this case, the ReB is
the most appropriate decision maker.
The public health ethics issues
This case is concerned with the ethics of research involving human participants.
Because the decision discussed in the case does not involve a single
individual but a class of participants and a community at large, we are in
the domain of public health ethics. Several distinct issues can be recognized:
» Respect for autonomy: The overarching principle of ethically sound
research with human subjects is respect for persons. This principle
incorporates the moral obligation of respect for autonomy. The most
important mechanism protecting autonomy is free, informed and
ongoing consent of research participants. 1 (Chapter 3) In this particular
case, participants (one of them being Jonathan Bleau) enrolled in a
biobanking project called PreHealth. They consented to participate
only in cancer research. Because research participation ought to be
a matter of choice and not an obligation, the use of their data and
samples for research on an infectious disease would normally require
another consent.
» The role of research in promoting the common good: Research
is an important societal enterprise that not only expands knowledge
but also produces common good and enhances the well being of people.
ReBs, while protecting participants, also serve “the legitimate
requirements of the research.” 1 (Chapter 1B) In Canada, where a consensus
supports caring for each other by using public funds to pay for the
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