Translator: Maria Pericleous Reviewer: Chryssa Takahashi
I will speak to you in English,
although you can tell my native language is Greek.
One of my favourite authors, Vladimir Nabokov, wrote once:
"My personal tragedy, the one that cannot and should not be anyone's concern,
is that I abandoned my natural language, my natural idiom".
And although I won't go as far as him to say that it is my personal tragedy,
I did abandon Greek, and I adopted English.
The language of science, of modern science.
And I adopted English when I embarked on my intellectual and professional journey,
to study something that fascinated me for a long time,
and that was the interaction between science and society.
How do they relate to each other?
How, through this interaction,
moral boundaries are emerging for science and for society.
In other words, I've been trying to study
how the language of science and the language of society relate.
Is this a tragic relationship of abandonment,
or is it a relationship of symbiosis,
and if the latter, what does it mean really?
How does it work?
And what I'm going to talk to you about tonight
is an illustration of that relationship,
because I find the example of tonight much more interesting than many other
because it is about science, made by non-scientists.
Now many of you, in this beautiful room,
are calling yourselves scientists I guess,
and we heard today a few scientists speaking.
To do that, you studied at an institution,
you had tests, certificates,
and you entered a community of experts.
A close-knit community, which has a particular language, and a code.
Now, in this closed net we take pride,
because science is important, and scientists are important,
and without science, our lives wouldn't be as liveable as they are,
and our opportunities to flourish would be limited.
And that's an important thing to remember.
So science and scientists are very important,
but the question I want to put to you is,
how would it be if I told you that non-scientists, any of you,
ordinary people out there, can actually contribute
to the development of scientific knowledge?
How would it be, if just ordinary people,
who don't understand
the scientific method, the scientific thinking,
people who never stepped foot in a lab that sequences people's DNA,
they can make a significant contribution
in the development of scientific knowledge.
This is not bad science fiction.
As we speak there are millions of people, the ones you see here, on this slide,
around science,
that are actually making important contributions
to scientific development.
Now, the phenomenon is called "Citizen Science",
and the people who do it "Citizen Scientists".
It's a hard thing to define,
so I will try to use some examples to define it,
but before I do that, my remark is, when I use the word "Citizen",
please don't think of citizen in the sense of a membership to a state,
rather, membership to the state of knowledge,
or to the republic of knowledge.
A republic in which we are all members,
and in which we all have rights and responsibilities.
Let me get to the examples.
Citizen Science comes in various forms.
One such form is in crowds.
4,500 people contributed their observations
during a solar eclipse
which helped scientists understand why, during the solar eclipse,
there is an eerie sense of cold wind for those observers.
For many years, scientists were trying to understand that, but they couldn't;
what they were missing is all these observations.
Imagine 4,500 scientists making an observation,
that's a lot to ask from scientists.
Those citizens contributed that.
In 2007, a group of astronomers developed Galaxy Zoo,
an open platform where they uploaded pictures of galaxies.
A lot of observable galaxies that we need to understand,
but we have to classify first.
They asked the public to help classify those galaxies and they thought,
well there are going to be a few people maybe, interested in this project,
who knows how many.
In the first year, 150,000 people made over 50 million classifications,
a lot of people got interested in this project.
Galaxy Zoo is one of the very successful Citizen Scientist projects,
and has now moved into something called "Zooniverse",
which is a platform that hosts a lot of Citizen Science projects,
from Astronomy, to Physics, to Medicine, Biology, and many other areas.
But Citizen Science comes also in other, smaller kind of constellations.
These are the Hempels.
The girls, the twins, were born with a disease.
It took them two years to find out what the disease was.
It looked bad, and the doctors eventually figured out
that they suffered from the Nieman Pick C disease.
There is no treatment,
they probably wouldn't come to adolescence.
The responsible gene for that is the one that controls our lipids.
The parents are not scientists,
they haven't gone to an institution that teaches science,
and they don't have a degree in science.
They were devoted, caring, curious, maybe desperate,
and really convinced
that they have to do something to help their kids.
The girls are suffering from a rare disease,
so not really in the centre of the scientific interest.
They pushed very hard, they fund-raised,
they networked with scientists, they collaborated with scientists,
they were even able to come up, themselves, over their own study,
with a compound, cyclodextrin,
that convinced eventually some scientists to put it in a clinical trial.
The clinical trial is today funded
by the National Institute of Health in the United States.
We still have to know the result but still it is a contribution to their kids,
but also to the generalizable knowledge,
to the tree of scientific knowledge.
Kim Goodsell is an extreme athlete.
While she was training for Iron Man, she started having instability.
She went to doctors,
they diagnosed her, eventually, with two diseases.
Probably rare again,
and told her that she simply had bad luck;
well, she was not very satisfied with that.
She needed to do something, and she convinced herself
that she needed a unifying diagnosis
of how can one have two diseases at the same time
and we don't know what to do about it?
She invested hundreds of hours to study genetics,
not in an institution, not in a lab, studying sources that she found,
and trying to connect the dots;
and she eventually did, to the surprise of the top experts in the field.
Today she says her contribution not only helped her, to improve her life,
but also to produce that little tiny bit of knowledge
that can be generalized and help others.
My last example is Sara Riggare.
Sara is a Parkinson's patient,
and she also calls herself Citizen Scientist.
She has to take six prescription medications, six times a day,
at five different intervals, in six different combinations.
You can do the math.
What Sara says is that that's a lot of self care.
All the blue dots on that graph are the 8,765 hours that she self-cares.
The red dot, it's the one hour that she sees her physician in a year.
What she says is that she doesn't want one more hour, or a lot more red dots.
What she argues is that in all those blue dots
there is a lot of knowledge that she can collect,
and that knowledge can help her, can also be used for other patients.
This is a kind of knowledge we don't capture,
because she goes to the doctor only for that hour,
and she tells him or her that she took the pills
or she feels better or worse.
Her point and her advocacy has been to encourage patients
to collect this data, to collect the observations,
and put them back into the pot of data that scientists can analyse.
The reason that Sara is arguing that this can happen,
and she is trying to motivate the Parkinson's community
and many other patients for that,
is because, with the technology we have today, that is possible.
We all walk around with our smartphones,
we can take pictures, we can measure things,
we all have sensors, or most of us,
and globally we know that there are more smartphones,
active subscriptions and mobile phones, than people on the planet.
So that's not just a few people,
there's lots of people with the technology.
We are mostly on the internet, most of us on the internet,
we have technology, we have connectivity,
and there's something else that's happening.
There is a social trend about empowerment:
how we, as scientists, citizens, patients, whatever capacity we have,
can become more in control of our lives
and become more active participants in decisions that matter about our lives.
And these different things that are happening
have created a very fertile environment for this movement of Citizen Science
to emerge, and also to flourish.
But you can ask the question.
I told you already that science is great, it has done so much for us,
does it really need all those people?
Doing things of that sort?
Maybe the Hempels or Kim Goodsell are extreme cases, and that's welcome,
but do we have to systematically go out there
and encourage people to do that stuff?
Does science need that?
And, more importantly, does society need that?
And I'll answer the question, I hope,
"We live in a society absolutely dependent on science and technology,
and yet we have cleverly arranged things
so that almost no one understands science and technology.
That's a clear prescription for disaster".
Scientific literacy around the world is not great,
even in countries that produce some very serious science;
at the same time, science becomes more complex,
and we more dependent on science.
And yet we don't understand it, lots of people don't understand it.
Citizen Science and this engagement with the scientific activity,
this hands-on engagement,
can actually contribute to filling this gap.
Science is important for democracy, I hope you agree with me on that,
but I'll explain quickly why I think it's really important.
Democracy is something that we all participate in,
or we ought to participate in:
we have to make decisions collectively,
about scientific matters and societal matters.
And the important thing we have to do is to be able to think critically,
and not be swayed
by things that are not real, by non-facts, et cetera
Science, the scientific thinking, the scientific method,
the critical eye that science introduces to the way we approach things,
can help us do that.
Can also help us think, and probably understand,
that sometimes true things are counter-intuitive,
and that's always a little harder on us.
But for democracy we would need to develop those skills.
And because democracy is something that is for all of us,
we can't expect that the tools of thinking, of critical thinking,
and of these possibilities of evaluation, are only kept for the experts.
We all have to be able to deal with those tools.
"Out on the edge
you see all kinds of things you can't see from the center."
"Big, undreamed-of things - the people on the edge see them first."
If you have people on the edge of science, they can see things.
The rare disease people can see things.
Sara Riggare can see things, she is not in the centre of science.
She is out there.
And she can imagine things that it would be very useful
if those scientists in the centre were able to understand.
There is insight on the edge that is necessary for the centre.
This language of the side, of the edge, can be useful
to the language of the centre,
and it's an opportunity with Citizen Science to bring it in,
and therefore it's an opportunity to enrich science,
if people from the edge are coming to the centre.
It is therefore important, not only for society,
not only for democracy, but also for science itself,
to encourage and respect and protect Citizen Science.
And in fact, in my view,
it's important for all of us, no matter what role we play.
And if it is so important,
we also have to protect Citizen Science from some risks that it might run.
And there are two risks:
one is the risk to be hijacked;
Citizen Science has become fashionable, it is becoming fashionable,
because, who wouldn't like a big crowd of 4,500 people,
or of a million people, doing a task voluntarily,
giving data voluntarily, without asking to be paid,
without asking anything,
just doing it for the interest of science, for the interest of scientific knowledge.
It's a great thing.
There are a lot of interests coming in there.
If Citizen Science gets hijacked, if people are exploited, it won't work.
If people are not given credit for what they do, it won't work.
If people's interest of altruism
to help science, to help our society become better,
are hijacked by other interests
that are not aligned with the motivations of Citizen Scientists, it won't work.
And that would be a huge loss, so we have to protect this phenomenon,
we have to protect the participation of all citizens to science,
from that particular risk of being hijacked.
But Citizen Science runs also another risk.
A little bit more subtle but equally important.
This is the risk of suffocation.
Our standard science, our mainstream science,
the one we take pride in and we like, and it has helped us so much,
is a closed system, it has its own language,
it has its own rules, and for the most part
that's a good thing, we don't want lousy science
that changes its rules every now and then,
but we want openness in science and inside the scientific community.
We want openness that will allow science to see its own blind spots,
because it has them.
That means openness to accept that those people from the edge
have something important to contribute to the centre,
and therefore means
that it won't suffocate that activity that's coming towards the centre.
And for that we don't even need to invent a new moral imperative,
a new ethic.
It's actually a very fundamental thing in our morality, in our humanity,
to have people, all of us, participate
in a valuable social activity like science.
And you won't have to go too far to discover this,
it's already inscribed in the Universal Declaration of Human Rights.
One specific article which, even if you are familiar
with International Law and Human Rights
you may not have actually paid attention to because nobody did,
is this one, Article 27,
which recognises that we all have this right to participate
in the cultural life, the community, enjoy the Arts,
and to share in the scientific advancements and its benefits.
While we are all interested in the benefit,
we have paid little attention
to the importance of sharing in the scientific advancement.
It's now a big opportunity to have Citizen Science
and that participation in the making of scientific advancements,
giving us all the hope we probably need.
And I hope we won't miss this chance.
Thank you very much.
(Applause)