Why biomedical philanthropy supports redundant science | Aled Edwards | TEDxToronto


Translator: Mirjana Čutura
Reviewer: Tijana Mihajlović Parkinson’s disease. Do you realize it’s been 200 years since Parkinson described
the disease named after him? We still really don’t have
an idea about what causes it. And it’s been a hundred years
since Alzheimer described that disease. And we also don’t know what causes that, let alone have an effective treatment. We also don’t really understand the mechanisms of autism,
schizophrenia, depression. And I could go on and on. What gives? We know biomedical research has given us
stunning advances in the past: antibiotics, vaccines,
insulin, hypertension treatment. So why has progress in so many
other diseases been so slow? Is it a resource problem? I don’t think so. Around the world, we’re spending
about a quarter of a trillion dollars every year on biomedical research – a quarter of a trillion dollars. That’s a lot of money. So I think the root of the problem
is how we choose to spend that money. Instead of funding science
for the joy of discovery and realizing that economic growth
is the consequence and not the aim
of a vibrant science culture, we now seem to fund science primarily
as a means to promote economic interests of scientists, of institutions, nations. Instead of measuring progress by lives saved or knowledge gained, we now seem to link progress to the number of glassy towers we build,
full of innovative people drinking lattes. (Laughter) And it’s not as if
economic growth is a bad idea, but after 30 years of this model, it’s not yet delivered
what we all really want, which is affordable medicines. And the consequences of all this
is academic science is now a business, a business in which we compete
more than we collaborate, a business in which we reward
splash over substance, a business in which transactions
between professors involve lawyers, and a business that benefits
rich nations over developing ones. I think it’s time to take a step back
and reconsider our approach. And the first thing we need to do is – we, scientists, need to look in the mirror
and say, “We’re part of the problem.” And that’s going to be
really difficult for us because we’ve grown up in a culture that requires and even rewards
self-promotion. Our institutions also
need to take some ownership. Although our progress
has been relatively poor, that hasn’t stopped us from churning out
hyped up press releases about all the innovative discoveries
we’ve been making and the cures that are
right around the corner. “Please donate now.” I think it’s time we showed
a tad more humility. And remember what the French
author Giraudoux said, “It’s only the mediocre
that are always at their best.” (Laughter) And if we come to terms with this,
then we can start over again, and I think the first thing
to do is to remember why we fund science in the first place,
why we became scientists. I know I became one,
and my colleagues often, because we’re curious people. And maybe we’re excited
about making some discovery that helps one
of the world’s big problems, like climate change or disease
or food scarcity or income equality. None of us became a scientist to become
“innovation” engines of discovery. And yet our government sees
that sole purpose of funding us is to promote economic growth. And this has created a system of science
in which the incentives used to reward us are often not aligned
with the public good, a system of science that promotes
personal recognition and gain, a system of handing out research funds
that promotes secrecy and duplication of effort. It’s a system of science that wastes time,
and wastes minds, and wastes money. And it’s the system
that just has to change. We need to remember what Pasteur said
more than a century ago, “Science belongs to no country
because knowledge belongs to humanity, and it’s the torch
that illuminates the world.” And if we remember what Pasteur said, then the next time we make
a discovery, we won’t think, “How can I benefit myself
by keeping this secret or patenting it?” We’ll start to think, “Well, how will the world benefit quickly
if I share it and give it away?” Pasteur reminds us
that science is a gift to the world, and if we remember that,
the cures will come faster. And in today’s parlance what Pasteur
was talking about is called open science. And it is the solution,
but it’s far from today’s reality, and we need some help to get there. Before I tell you how you can help, I want to probably dispel a misconception. Some of you, most of you,
all of you out there might be thinking, “This guy on the stage
is a naive tree-hugger, sits around the camp fire with all of his communists
science friends, you know, (Laughter) singing Kumbaya.” But I want to assure you
that my push for open science is not a political one
nor a philosophical one. It’s an evidence based one, based on cold hard analysis
of innovation and economic policy. Let me describe it to you. About 20 years ago,
before we knew our genetic code, biomedical researchers were working
on about 3,000 genes. And at the time, it was a great mystery – how many genes would there be
in a human being? The most popular guess was 150,000, and when we got the answer – 20,000. Humans have fewer genes
than some plants and some parasites do. The only person who wasn’t
surprised was my wife. (Laughter) Now 20,000 genes
seems eminently tractable; if we know what each one does, how they talk to one another,
how they talk to the environment, we can basically explain
how a human works, how to fix us when we go wrong. Alzheimer’s, schizophrenia, depression –
all were in our crosshairs. So now we are 15 years later
and what happened? Where are all these answers? Well, they didn’t happen
because nobody studied those new genes. I’m not kidding you. And I’m going to show you. So on the next slide,
I’m going to show you a graph where I have some
of the human genes on this axis and the number of the scientists
that work on them on the other axis, as measured by the number of papers. And here it is. So up here you can see before the human genome was sequenced, we only knew what a few genes were. Here are some of the genes,
the most popular ones. These ones are less popular,
and nobody worked on these because, of course,
we didn’t know they existed yet. And now let’s fast forward to 2012
and ask ourselves what happened. Wow. Most of the scientific community continues to work on the genes
that were popular last century. It makes no sense to you, does it? But I can explain it. It makes perfect sense. You see, the way we hand out
research funding to work on these genes is very competitive, and there’s only enough money
to fund the best proposals. And the best proposals are ranked by scientists who sit
around a table, “the peers,” and then they think, “That’s a good one.” And if you work on one of these genes, that many people
around the table have heard of, maybe some even worked on it, it’s far more likely to get funded than if you propose to work on
one of these genes that nobody’s heard of. And I should tell you
there’s abundant evidence that there’s a lot of interesting
and disease causing genes out here. Wow. This is distressing. But, you know, I thought
this can’t be true for us. Canadians have to be different, right? I’m at the University of Toronto, and I know my colleagues and I are
all brilliant, or so we tell ourselves. And so this can’t apply to us. So what I did to prove
our Canadian exceptionalism, I just said, “Show me only
the work done by Canadian scientists.” So ranking the genes in the same order as they are on the popularimeter
of the last century, I said, “Show me the Canadian science.” We do the same. We’re no different. And to be honest, there’s no reason
to expect to be different. We use the same incentive system, the same system of science
as all around the world. It’d be irrational to expect
a different outcome. And to be fair, I did this experiment
for Germany, UK, Harvard, Toronto, Oxford; it all looks the same. And what are the implications? That much of Canadian science,
indeed much of global science, is redundant. And what does it say
about any individual like me? I’m an irrelevant cog in the machine. Any experiment that’s been done
here in Canada is likely taking place in ten other places
around the world at the same time. And that quarter of a trillion
dollars I told you about – if we keep dividing it up by country
and spending it in a redundant way, it’s probably getting 10 cents of value
for every dollar invested. Something needs to change. Imagine if we could spend
that money more effectively. Imagine if we could use
the resources more efficiently; it would have a massive
global economic benefit. But it won’t happen
unless we treat science as a global phenomenon, and not fund science to promote
national proprietary interests. In an open science world, if Canadian scientists work
in a certain area and let the world know, then other people around the world don’t have to do exactly
that same experiment. Much as we don’t have to do
the exact experiment that they’re doing. It’d be a tremendous
increase in efficiency. A rising tide that lifts
all national boats. And remember that 10 cents
of value for every dollar? In an open science world,
a discovery may generate 10 dollars of value
for every dollar invested, as the impact of every discovery gets
amplified as it travels around the world. Open science is the key
to the development of cures and to global advancement. And, albeit it’s still a dream, but some projects are showing
that it can be done. Projects like The Human Genome Project, which stated that our genes
wouldn’t be patented and donated to the world
for the benefit of humanity. Projects like
The Allan Institute in Seattle, whose mapping of the brain
is being shared with the world. Projects like The Montreal
Neurological Institute at McGill, which decided to forsake patenting
on all its discoveries, in essence saying, “Our mission is our patients, and our science will be
our donation to the world.” Projects like The Rare Disease Catalyst
at the University of North Carolina, where sharing is
the core part of its mission, sharing not only with scientists,
but also with patients and their families. These projects are
something to be admired. You’re probably asking,
“But what about value? Are these projects giving away
the farm by sharing? Will sharing and being open inhibit
the translation of ideas into treatments? Will the private sector run away?” Well again, the evidence suggests not. Heidi Williams at MIT now
did a great experiment in which she studied the economic activity
from two sets of genes. One set of thousands of genes –
each gene had been patented – and she compared it to another set where none of the genes
had ever been patented. And she watched the activity
over a decade and guess what? The genes that had never been patented
gave 30% more economic activity. A clear evidence that patenting
inhibited innovation. And our project tells a similar story. We practice an extreme version
of open science. We commit never to patent anything, ever. All our scientists come to the lab with the idea of donating
their knowledge to the public good. And the lab is not full of hippies. (Laughter) Many of our scientists had
illustrious careers in industry; three actually invented medicines. And we get a lot of our funding
from the pharmaceutical sector. Yes, that patent-hungry
pharmaceutical sector has invested 200 million dollars
into our project over the years. Think about that. Ten pharmaceutical companies
collectively invested 200 million dollars into a project that forsakes patents. Why? Because they know open science
is good for business. The public and private sectors appreciate that the key to developing new treatments is that we need to understand
biology better. We need to work on those new genes. We need to work in risky areas. But they also know that the incentives
in both sides can’t allow that to happen. That’s what open science
has allowed them to do – to come together and create
a new incentive system, one that encourages the work
on the unknown genes, one that allows us to take risks,
rewards us for sharing, looks at science as an international,
not a national activity. This is a phenomenal thing. And does it deliver? Yes. The guys in our laboratory
have generated reagents that are given away and are being used
by 10,000 laboratories around the world. They’ve already appeared
in 4,000 publications. And industry is using our reagents in hundreds of internal
drug discovery programs. Academics have used our reagents to make
breakthrough discoveries in cancers that are being tested now in more than
30 clinical trials around the world, including one right down the street
at Princess Margaret Hospital. Our science has created
a new multi-billion dollar industry – a new market in which
industry is competing. Although it may sound counterintuitive, I think that the private sector,
perhaps even more than universities, appreciates that open science
is the key to innovation and the discovery of new medicines. And so, there you have it. I think we should all be
extremely frustrated by the way in which science
is practiced today. There are discoveries to be made,
diseases to be understood, and a system that gets in the way. And I don’t want my children
when their children get ill to ask me, “Dad, you’re supposed
to be a super genius. Why didn’t you do something?” Well, I hope you can see
I and a bunch of us are trying, but we’re going too slowly. We need your help. And you can help. The next time you support a cause
about which you’re passionate, any cause, just make sure it supports open science, science that’s meant to be shared. And if you support open science, you can actually change
how science is done. You can give us the tools,
the freedom to go along roads not taken. You can actually help us
develop new ideas, new biology, new treatments, and new cures. And the best thing is,
if you make this happen, then you can tell your children
and their children 30 years from now that even though you did not actually
put on your lab coat yourself, you helped promote open science,
and that made all the difference. Thank you. (Applause)

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