i2eye with Bartha Maria Knoppers
i2eye with Bartha Maria Knoppers
“Don’t plan your career — be curious.”
Knoppers turned her love of books into a master’s in comparative literature at the University of Alberta, then tackled a law degree at McGill and the University of Cambridge and rounded it out with a doctorate of laws from Université Paris 1 Panthéon-Sorbonne before undertaking a career as a law professor at Université de Montréal.
Along the way, she became one of the world’s leading authorities on ethics, law and policy in the fields of human genetics, reproduction and biotechnology.
The Dutch-born scholar, who served as a member of the International Bioethics Committee of UNESCO that drafted the Universal Declaration on the Human Genome and Human Rights, has also been a key player in Genome Canada, Génome Québec and the Canadian Stem Cell Network.
The recent announcement by American President Barack Obama to lift the ban on federal funding of stem-cell research and pump an additional $15 billion into genetic research has generated many headlines. InnovationCanada.ca sat down with Knoppers to discuss what this could mean for stem-cell and genetics research in Canada.
InnovationCanada.ca (IC): Why does stem-cell research — and genetic research, more generally — matter to the public?
Bartha Maria Knoppers (BK): A couple of reasons. First, stem cells hold some very promising therapeutic, or auto-therapeutic, potential: the idea that we can treat or cure some severe conditions with stem cells. But it’s largely the sources of stem cells — for now, the best are still embryonic — that constantly thrust them into the limelight. Similarly, genetics has a long ethical history, one of social and historical abuses and misinterpretations. Genetics was long associated with very severe single-cell hereditary disorders, but recently, we’ve come to realize there are genetic factors even in common diseases such as cancer, diabetes or hypertension, and that’s exciting too.
IC: Why are these issues so emotional?
BK: With stem cells, we are dealing with the possibility of refashioning, in the early stages of life, the potential of cells. With genetics or genomics, it’s the possibility of making lifestyle or reproductive choices that can prevent the expression of genes. Both of them are very much quality-of-life choices at the beginning of life, and that, like choices at the end of life, will always attract social-policy attention. It’s getting the nuances in the debate correct that is the most important.
IC: And are we getting the nuances right?
BK: We’re starting to. There is profit to be made from being a naysayer or a proselytizer, and I think both these camps often exploit the media in a way that we lose the nuances. We lose the “yes but” aspects, and that’s where the richness of the debate is — not in the extremes.
IC: Barack Obama has opened the door to stem-cell research. Is that important?
BK: It matters very much. There is a message being sent. I will never forget watching George Bush on August 9, 2001, saying that no federal funds would be used for research involving human embryos and that only certain cell lines would be available from the National Institutes of Health (NIH). When Barack Obama announced his policy, it was symbolic, but he was very careful. He didn’t throw it all open. He asked the NIH for guidelines.
IC: What is the difference between Canada and the U.S. now?
BK: Barack Obama’s new policy puts the U.S. in a similar position to that of Canada. Canada has had the Assisted Human Reproduction Act since March 31, 2004, which says that embryos used in research must be surplus and that consent must be given for this use. Neither Canada nor the U.S. allows the creation of embryos specifically for research. Both countries have very detailed consent procedures. In Canada, there is the additional restriction about payment: we don’t allow payment to sperm or embryo donors, so we have a real shortage here.
IC: Do you think public attitudes are changing?
BK: I think the public is quite excited about the potential of stem cells. There is a lot of hope out there. But the public doesn’t always understand the actual limits. It is hopeful about umbilical cords, but those don’t contain enough stem cells. There’s excitement about adult stem cells — called induced pluripotent stem cells, or iPSCs. They look like the ideal solution. But for iPSCs research to be validated for therapies, you have to reprogram them back to their original function, so you always end up back at the beginning of life. So there is not yet an embryonic panacea.
IC: Has regulation impeded investment?
BK: There are bioeconomies like Korea and Singapore that are investing very heavily in biotechnology, and Canada can’t compete with them under its current rules. It has slowed down investment potential.
IC: Does the ethical minefield in stem-cell and genetic research scare away researchers?
BK: For sure. You need to have a pretty solid backbone, an almost missionary attitude, to pursue research in these areas. As an academic, you’re supposed to produce papers in your field and advance knowledge. Communicating with policy-makers, the public and the media takes a lot of time and a tremendous amount of energy. Many people run away from this, saying, “I want to work in my lab. Leave me alone.” But scientists have to speak out on these issues. They can’t leave it to ethicists alone.
IC: You were involved in the drafting of the Universal Declaration on the Human Genome and Human Rights. Why do we need such a thing?
BK: It was probably the first prospective thinking-ahead document in this area. We started in 1993 and finished in 1997. The Human Genome Project only started in 1990, so we had the ability to frame issues, such as ownership of patents, research in culturally disadvantaged peoples, and so on. It was a reminder that there are many values at stake. It was ahead of its time, and you can see reflections of it in most ethics guidelines and in the laws of most countries. It was a seminal document, and I’m proud to have been part of it.