Dr. Bartha Knoppers has spent the past 35 years cultivating her reputation as one of Canada's leading bioethicists.
She is currently the director of the Centre of Genomics and Policy at McGill University and former chair of the International Ethics committee of the Human Genome Organization. Last year, the Canadian Gene Cure Foundation named her "a Champion of Genetics."
Her groundbreaking work – Knoppers founded the research organization Population Project in Genomics and a biological sample storage system (biobank) called CARTaGENE, which maps the genetic and environmental sources of common chronic diseases affecting Quebecois – offers incredible promise for treatment, but also raises challenging ethical questions.
Tomorrow, March 12 at 6:30 p.m. she will speak at an event in Vancouver on some of those ethical challenges that researchers face as technology progresses. The Tyee chatted with her beforehand about her work and why "big ethics" matter.
What are some of the potential ethical dilemmas that arise when you're working with large medical information databases like biobanks?
"I think that the first is maybe the understanding of what we're trying to do. Because there's a lot in the media about the Snowden and NSA and surveillance and big brother is hovering everywhere, or increasingly hovering everywhere.
"So you have that sort of fear that if I put my data, including medical data and genetic data or neurological data or whatever -- even MRI images -- if I share it, who will see it, will they re-identify me, do I want to be re-identified?
"And so you've got that phenomena, and at the same time you're in a world where everyone expects to be connected and expects that things are efficient, and that electronic health records are being shared with pharmacists and with your physician and with the hospital that you may go to one time and then another hospital another time.
"[People] expect, together with social media, that things are sort of working and being shared. And at the same time there's this fear. The fears and the promises of greater efficiency, greater precision, better medicine and so on against dangerous use by people who want to abuse the open part of a lot of data sharing."
Can you think of an example or a circumstance where this dangerous use of shared data has been an issue?
"I've not found a breach yet in international collaborative projects. And that's in the last 10 years. Now I'm not talking about things that happen with government employees computers left open on their desks. I'm not talking about spy agencies. I'm talking about collaborative research in genomics, and exchanging genomic and medical data across boundaries."
What are some of the ways in which data banks like this are kept secure?
"What I know from my experience with CARTaGENE, which is the population biobank I created here in Quebec, we have a data curator. We give a code key for every person who's given a code. And every time their data samples are used it's recoded again, and recoded again before another researcher. So there's a series of keys in a system with a server and a backup server with a different geographical environment. We have quality assurance research going through all of the time to make sure it really is secure, and the rules of governance and access are working. That the researchers are signing contracts that bind them to what they can and cannot do with the data and so on."
What are some of the biggest positives that have come from having access to databases like this?
"First of all we've done the map, the sequence map. But what we don't have is a map that allows you take your genomics and put it into the medical, everyday disease context. To look for patterns of resistance to let's say infectious diseases or susceptibility to cancers or better drugs that could be tailored to people with this kind of pattern, which mixes of course environmental with medical with genomic data. There're a lot of promises on the diagnosis side, on the drug pharmacogenomics side, on the epidemiological sort of environmental insulance side. So I think it's quite exciting that the two worlds are finally going to start coming together."
What project or research are you currently the most excited about?
"There are a couple of projects that I will describe in my presentation. There is the International Cancer Genome Consortium -- that's the Canadian led international consortium. And then there's the Global Alliance for Genomics and Health -- which was mentioned recently in Nature.
"I'm going to use those two examples to show not only of why they're doing this but how they're doing it within an ethical framework."
You mentioned that as new technologies come out in science, the policy and laws don't necessarily match the new technology. Do you think that this has been the case with biobanks?
"Oh yeah. When we started biobanks we had a real difficulty convincing, in particular ethics committees, that we were building resources for other people. It's a resource and it's an infrastructure for future unspecified research.
"It's a whole new way of doing science where you build longitudinal studies where the samples of the data can be followed over time so you can measure the effect of socioeconomic factors, of environment, and this data is available to scientists who want to study 500 or 5000 women or whatever with breast cancer and so on.
"So these populations, biobanks in particular, we had a situation about what you do with them. Now they're all around the world, and P3G [a Population Program in Genomics] which I've created did all the ethical and scientific norms for population biobanks."
In some countries, such as the Netherlands, people are hesitant to become involved with registries and data banks because historically when the country was occupied in WW11 the Nazis got their hands on lists of people disabilities and so on. There is still some residual fear about that today. Do you think these fears, in today's day and age, are relevant?
"I come from the Netherlands so this a good example. I think that the older generation and my parents were extremely marked by the war. The fact was that scientifically unfounded eugenic policies of the Nazis could be used to harm those who are already vulnerable such as the handicapped or the aged. Registries of any sort could identify religion -- who was Jewish or Gypsies and so on.
"In that sense I think the older generation would be hesitant, to that degree. But you have countries like Denmark for instance, where everyone is given a number at birth and they're traceable.
"So it really depends on the socio-cultural history and the experience of a country. But I would think that the younger generation is probably more amenable. Because they're more socially networked so they're used to sharing. I also think that they understand that our universal health care systems, if we want to keep them, cannot be sustained and cannot go on in an economic sense unless they are more efficient.
"You have to have access from a health care system, never mind the personal benefits of sharing data and the difference for healthcare, but from an economic point of view of knowing what works and what doesn't work.
"Resource allocation questions can really be helped by having the ability to link data sets -- health administration data sets -- and follow what is and what is not working and should be targeted. Instead of 'everybody get vaccinated, the H1N1 flu is coming.' Why didn't they know who is susceptible and who was a resistor and who was a transmitter? Because they didn't have any studies large enough with sub-populations where they could figure out who was at risk and who wasn't."
In your abstract you pose the question, "In a world of big research and big data, are big ethics needed?" How would you answer that?
"We not only need to harmonize ethics review in Canada, and not have 17 different committees with seventeen different opinions. We really need to think big ethics. We need to think of a system of ethics review that is respected and can govern internationally how science is done. I'm not saying local ethics isn't needed, I'm just saying that for international consortia, we need to have international ethics review. Which does absolutely not exist."
And how long do you think it will take to create a more unified voice like an international ethics review?
"Well on a good day I would say five years -- on a more realistic day I would say 10. You have to really believe in something like that, because it's a concept of course. Everyone thinks that their ethics is better. Or other people will say there is no such thing as universal ethics. Well neither of them matter.
"What matters is that the system of ethics review in France, let's say, is considered to be the equivalent of the system of ethics review in Canada. It doesn't matter that you have a constitution and we have a law, or they have guidelines. Or it doesn't matter your local, regional, or national in one country versus another. What matters is can you recognize as a country, that their system for ethics: their processes, procedures, their guidelines, their laws, whatever... are equivalent in protecting their citizens and advancing science to what we have here. And that's what's called a safe harbor concept, which I'll be talking about [on Wednesday]."
What motivates you to keep doing this type of work?
"I just like working with ideas and going over and above barriers and building projects and frameworks and collaborations which are with people who either share that vision or want to see things like that happen. And to me, I'd like to be a citizen of the world. So I have the same attitude towards what I do in my work."
Is there something you think is really important for people to know about your work in this field?
"I think it all comes down to a matter of trust. Trust comes down to a matter of relationships. And relationships are formed when you can see the justification, the long-term goal and where you need to go, and you work with like-minded people. So I think it's a problem of systems -- but it's a solution in relationships."
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