This is a stand-alone GE3LS project.
Genomics is a powerful tool, which can provide information on the susceptibility of individuals and families to infectious and communicable diseases. Public health researchers are becoming keenly aware of the value of creating, accessing and planning genomic databases, in their quest to understand and control infectious diseases, such as SARS (severe acute respiratory syndrome) and tuberculosis. But such databases raise many ethical, legal and societal questions, in the areas of informed consent, confidentiality, and the boundaries between private and public goods.
Bartha Maria Knoppers, Canada Research Chair in Law and Medicine, and Professor of Law at the Université de Montréal, is leading Genomics and Public Health (GPH): Building Public “Goods”? GPH will examine ethical, legal and societal issues related to the use of existing databases or the creation of new ones. For example, have individuals, families, communities or populations involved in research consented to unforeseen changes in the use of their genetic information, if databases are merged or put to new uses? What should be the policy framework for access (if at all) to the results of genetic screening programs of newborns? How can the potential interests of a population deemed to be “at risk” of infectious or communicable diseases be balanced against individual confidentiality and the security of databases? And can these databases be used in the public interest or for the public good, in ways that protect individuals and family participants?
Knoppers’ team will undertake research, interview healthcare professionals and policymakers organize a policymaker’s forum and a citizen’s workshop and hold an international symposia involving public health and genomic researchers, consumercitizens and health professionals. Her team will develop a policy framework (along with national and international collaborators) in order to help translate genomic knowledge into awareness for disease prevention and health promotion.