The accelerated world of medical research promises new diagnostic tools and treatments for Parkinson’s disease, multiple sclerosis, Alzheimer’s disease, and even cancer. These advances, however, raise a daunting array of ethical issues.
Enter Bartha Maria Knoppers, the recently appointed director of McGill’s new Centre of Genomics and Policy. Knoppers is a worldrenowned bioethicist whose work recently earned her a Distinguished Visiting Scientist Stipend from the Netherlands Genomics Initiative. At the McGill centre, Knoppers leads a research team that tackles issues
ranging from stem cell controversies to privacy concerns surrounding our individual genetic and genomic makeup. The aim is to promote good science and responsible research, while educating the public along the way.
The centre is located within the McGill University and Genome Quebec Innovation Centre, placing it at the heart of the genomic action. “It’s important in the development of policy to be surrounded by the very scientists and fields of science in which you’re working,” says Knoppers.
Five domains form the core of the centre’s work: procreation and reproductive policy; pediatrics, including the involvement of minors in genomic research; populations, including biobanks that store and organize genetic material and track whole populations; privacy; and the developing field of pharmacogenomics and personalized medicine, in which health care can be tailored to individual genomic and phenotypic data.
The centre’s own research database (publicly accessible at www.humgen.org) collects laws and policies from around the world and is used by high school students, royal commissions, scientists and policy-makers—anyone dealing with ethical questions in genomics research. The site also provides expert analysis from the research team: “We prepare editorials that people can use to analyze what’s happening regionally, internationally, or on a country-by-country basis.”
Knoppers heads up the Public Population Project in Genomics as well, providing IT tools for researchers to share data between large population biobanks. The biobanks collect enormous amounts of information on genetics, lifestyle, nutrition, income and other factors to examine how genes interact with their environment. Networking
such information will provide scientists with a bigger picture than they’ve ever had before.
“It means that the science moves faster, it’s statistically more powerful and thus more significant.”
Sound policy, too, helps move the science forward. Knoppers made news as the lead author of the Stem Cell Charter presented in September 2009 at the World Stem Cell Summit in Baltimore, where the aim was to affirm the importance of stem cell science for humanity.
“We want to bring stem cell science back into the public domain, away from some of the scandals and controversy,” declares Knoppers, “and prepare a code of conduct based on responsibility, protection of citizens, intellectual freedom, transparency and integrity. And then kick-start international research under these five principles.”
The Centre of Genomics and Policy receives funding from the Stem Cell Networks of Centres of Excellence, the Canadian Breast Cancer Research Alliance, the European Commission, the Public Health Agency of Canada, the Fonds de la recherche en santé du Québec, the Canadian Institutes of Health Research, the Social Sciences and Humanities Research Council of Canada, Génome Québec, Genome Canada and the Canadian Partnership Against Cancer.