Abstract:
Currently, there are often three possible time points for biobanking: birth, clinical (disease health context), or populational (medical/epi-longitudinal). These three possible points of genetic testing raise specific ethical, legal and social issues (ELSI) especially when whole genome sequencing (WGS) is used. However, what if sequencing and understanding an individual’s genome were to be continuous? Such serial testing and biobanking could conceivably follow an individual in real time in their own socio-environmental and medical contexts.  Would this concept of the “Measured Man” be beneficial for health systems planning or for research outcomes, to say nothing of the possible precision of ensuing therapeutic or preventative interventions?

Speaker:
Professor Bartha Maria Knoppers, Director, Centre of Genomics and Policy, McGill University

Professor Bartha Maria Knoppers, PhD (Comparative Medical Law), holds the Canada Research Chair in Law  and Medicine (Tier 1: 2001-). She is Director of the Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University.  She holds four Doctorates Honoris Causa, is Fellow of: the AAAS, the Hastings Center (Bioethics) and the Canadian Academy of Health Sciences (CAHS) as well as Officer of the Order of Canada and of Quebec.  She received the “Prix Montreal In Vivo: Secteur des sciences de la vie et des technologies de la santè” in 2012 and in 2013 was named “Champion of Genetics” by the Canadian Gene Cure Foundation.  In 2014, she was named “Great Montrealer”, Scientific Sector, Board of Trade of Metropolitan Montreal.