We the people, the citizen scientists | Effy Vayena | TEDxAthens

At the intersection of multiple fields, Effy Vayena explores how values such as freedom of choice, participation and privacy are affected by recent developments in precision medicine and in digital health.

Effy Vayena is Professor of Health Policy at the University of Zurich, where she leads the Health Ethics and Policy Lab.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx

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)