Expert Spotlight
Bartha Maria Knoppers, PhD (Comparative Medical Law, Sorbonne, France), is a Full Professor and Director of the Centre of Genomics and Policy, Faculty of Medicine, Human Genetics, McGill University. She holds the Canada Research Chair in Law and Medicine (Tier 1, since 2001), and is the founder of the Public Population Project in Genomics and Society (P3G) and CARTaGENE, Quebec’s population biobank. She is also one of the Founding Members of the Global Alliance for Genomics and Health.
Among her many honours and awards, Prof. Knoppers was named a Commander of the Order of Montréal in 2016, received the Medal Paul-André Crépeau for her work in comparative medical law in 2015, and was inducted into the Academy of Great Montrealers in the Scientific category in 2014 by the Board of Trade of Metropolitan Montreal. She was named Champion of Genetics by the Canadian Gene Cure Foundation in 2013, and received the Montréal InVivo Prize for the life sciences and health technologies sector in 2012. Prof. Knoppers is a Fellow of the Royal Society of Canada and the Canadian Academy of Health Sciences, and is an Officer of the Order of Canada (O.C.) and of Quebec (O.Q.).
QUESTIONS
- What first drew you to law, ethics, and genomics? When you began your post-secondary education, what kind of career path did you envision for yourself?
I was working on a doctorate on surrealist and protest poetry when, amid the political upheavals of the ‘70s, I switched tracks to put the breaking boundaries approach of that genre into action. So what most interested me upon beginning my doctorate in comparative medical law was to study and analyze the effect of an emerging technology (i.e., IVF) on physician–patient/research responsibilities and children’s rights. There were no precedents for this form of “creation” of a human being. I did not have a career path other than not wanting to be bored.
- What is the goal of your research?
Preparing policy for international genomics and health issues ultimately becomes contextual and cultural in that you cannot achieve any consensus or common framework without understanding the socio-historical and cultural translations of common ethical norms and legal rights. Hence, the need to travel (sigh), meet, and communicate with scholars in other countries and from different disciplines to prepare such policy. This takes time and trust.
- You are very much involved in international genomics and health issues. Can you share one or two career highlights?
Preparing UNESCO’s 1997 Universal Declaration on the Human Genome and Human Rights was the most fascinating and complex challenge of my international policy-making career. The other was creating CARTaGENE, the population biobank of Quebec (18 research ethics boards!), in 2007 and its international counterpart, P3G (Public Population Project in Genomics and Society), the latter serving to prospectively harmonize population studies so that they could share data in the future.
- You are familiar with the CCA, having been a member of the Expert Panel on Timely Access to Health and Social Data for Health Research and Health System Innovation (2015). You also recently joined the CCA’s Board of Directors (having been nominated by the Minister of Science), which is responsible for setting the strategic direction of the CCA. What attracted you to being a part of this aspect of the CCA’s process?
I am a legally-trained social scientist working with both basic genomic and bioinformatics researchers, as well as clinicians, so I span the range of Academies. The CCA’s work allows me to contribute my experience and hopefully provide some integrated insights.
- Is there anything you are reading or watching for fun right now?
I am in the middle of “granting season” [writing grant applications] so no time for fun or follies. I will read almost anything I can though I tend to lean towards fiction ― the ultimate escape route from the challenges of emerging technologies.