Gene Ethics

By Jennifer Towell

Interview with Bartha Maria Knoppers, Director of the Centre of Genomics and Policy

Bartha Maria Knoppers, Director of the Centre of Genomics and Policy

In June 2009, Bartha Maria Knoppers left her longtime academic home at the Université de Montréal, where she was the Canada Research Chair in Law and Medicine, to set up the new Centre of Genomics and Policy at McGill. Researchers in the CGP are tackling the most pres sing ethical and legal issues facing human genetics, with a particular focus on regenerative medicine, pediatrics, public health, privacy and personalized medicine.

You completed your first law degree at McGill. What drew you back to the University after 25 years away?

I had the very exciting opportunity to have my own centre integrated in the scientific community of the McGill University/Génome Québec Innovation Centre here on campus. I’m surrounded by people in bioinformatics, genotyping, phenotyping, microbiomes, you name it—as well as my colleagues in the Faculty of Law across the aqueduct. The team was built, the funds were there. I had already developed policy and research know-how, but here there was the chance to go to the next step, to apply those things in a more integrated setting. I’m getting more of a feel of the scientific community’s ideas, their passions, their ongoing application cycles! It was a big move.

Reflecting on the first year of the CGP, what were the highlights and challenges?

Bringing over about 12 full-time researchers and another 10 support staff and assistants is quite a major move. So, most of last summer was spent getting organized, but now we’re very well housed. There a new team dynamic, not only amongst my own team, but amongst those who want to come and work with us here. Even in the Innovation Centre itself, there’s now a monthly science ethics policy debate organized by the younger staff.

What are your priorities for year two?

Some of our ongoing projects, such as CARTaGENE [the collection of blood samples and detailed demographic data from the Quebec population] were left at U de M because, legally speaking, it would have been too difficult to bring them over. So we’re building new projects here, in fields that we weren’t involved in before, such as vaccines, microbiomes and metabolomics. But one project I’ll bring over soon is the Public Population Project (P3G). It’s a tool-building organization for allowing large biocollections and population studies to share data and gain statistical significance. Biobanks are systematic organizations of information and tissues; interoperability means we’ll see the fruits of these efforts much earlier.

Another priority is more of an open-access dissemination strategy, for the know-how, be it P3G tools or policy know-how. I’m looking for funding particularly for communication. Countries should be able to have access to our tools, like our international database called Hum-Gen. We’ve never had time to publicize it properly, but we still get over 500 hits a day. Those are the kinds of things you would like everyone to know about, so that policymakers, funders, researchers do not have to continually reinvent, and they can actually just use these resources.

Looking back 10 years, what surprises you?

I never thought that the momentum of big international research collaborations, like the sequencing of the human genome, would continue. [Knoppers chaired the International Ethics Committee of the Human Genome Project.] People really thought that would just be a one-time thing, but they’ve continued this philosophy of creating resources, of data-sharing, of building large consortia across political and legal jurisdictions. So that’s a really exciting, positive impetus to keep going.

What do you hope to see in the next 10 years?

Science is international, and so we need international governance that makes sure researchers are authenticated, that the science is being carried out as it said it would be in the protocol, and that the consent and privacy of the participants are respected. I would like to see some thing of a flexible structure that has input from the different projects or different countries, where there would be trust that this committee structure would actually be looking at the science that is approved, and provide a simplified system for delegated ethics review from the different countries. You need a lot of trust, and you need a lot of competent people in whom people have such trust.

The Centre of Genomics and Policy is funded by Génome Québec, Genome Canada, the Canadian Institutes of Health Research, the Stem Cell Networks of Centres of Excellence, the Fonds de la recherche en santé du Québec, the Canadian Partnership Against Cancer and the Institut national de santé publique du Québec.