PoPulationand Public HealtH etHics

to sHare or not to sHare?
Secondary Use in Public Health Emergencies
Ma’n H. Zawati, ll.M.
Centre of Genomics and Policy
McGill University, Montreal QC
Man.zawatI@MCgIll.Ca
All events described in this case are fictitious. All resemblance to
past events and persons, living or dead, is purely coincidental.
Introduction
Three years ago, Jonathan Bleau, aged 23, decided to participate in a largescale
biobanking project that was exploring how environment, lifestyle and
behaviour contribute to the development of cancer. Very enthusiastic about
this project and in solidarity with his mother-in-law who had been diagnosed
with breast cancer, Jonathan provided blood and saliva samples to the Pre-
Health Project based in Winnipeg, Manitoba. At the assessment centre, hosted
by the local hospital, Jonathan was asked to complete a lifestyle questionnaire
and provide authorization for the retrieval of pertinent information from his
medical records. The consent form he signed before providing any samples
or authorizing the retrieval of any data mentioned that both his data and
samples would be stored securely for 50 years and that access would only
be provided to researchers partaking in cancer research who had previously
obtained the necessary scientific and ethical approval. The PreHealth Project
is affiliated with a university in the region and the Research Ethics Board
(ReB) of that university’s Faculty of Medicine is in charge of approving any
access requests. After providing his data and samples, Jonathan decided to
leave the country to pursue a graduate degree in France without leaving his
new address with the PreHealth Project.
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Anne Marie Tassé, ll.D. (c)
Centre of Genomics and Policy
McGill University, Montreal QC