Ethique et l'intégrité collecte données

Titre :

Intervenant : Puneet Kishor

Lieu : RMLL2015 - Beauvais

Date : Juillet 2015

Durée :

Lien vers la la vidéo

00' J'essaye, MO

Rencontres Mondiales du Logiciel Libre. Beauvais 2015

Présentateur: Eh bien, nous allons commencer la conférence suivante et Corinne tu es avec nous, tout va bien. Je donne la parole. Ah, votre microphone est ici. Your microphon is there. I shall not translate.

Puneet Kishor : Was ?

Présentateur: I shall not translate, because...

Puneet Kishor : OK.

Présentateur: Ca va pour l’anglais tout le monde ?

Puneet Kishor : I am going to talk in English. I will give you a chance to practice your English with me. My frech

to be doing that any way. This is going to be a very different presentation, I think, from most of the presentations to be I hearing. Most of them has been about software. This is about mater  ????, not bigger, I don't mean ??? about an integrity and what became to should

So hopekly you will find interest in the I will reactions to that. It's very good that the conservation correctly about lesson . It'ss all right. I can got that, you now, my French is not good and my Spanish is not good and I don't

I had to leave to work for an organisation cll Creative Commons. How many people have heard of Creative Commons ?

I am surprise that you  ??? not heart of Creative Commons. Creative Commons is the organization that makes copyright licenses, when one of witch is actully use Wikupedia for evethinh that is published on wikipedia. S

cald or Creative Commons copiright licenses, I work

for three years and ythe manager

So my

09'53

If i am going to fast, let me know […]

But what about … Citizen Science?

13'36 - transcrit Juu

Three kinds of open projects.

How do we approve, evaluate and monitor some citizen science projects, that's the theme of my presentation.

There are three kinds of projects according to a paper that I found.

Projects where citizens contribute some information, projects where they actually not only contribute some information, but they also help collaborate and help design and even analyze some information. Galaxies dot dot (??) you actually see some information and you tell it's a star or a nebula or... You know, you actually do something, you think about something and you make a judgement call.

And then the various sort of the top end of the citizen's is where scientists and citizens get together and try and figure out what to study.

There is actually another fourth kind of citizen's sceince project that's happening a lot: self-organized. How many here have heard that quantified-self? Can you tell me what's quantified-self? Well, kind of. For example my phone has a motion sensor. Every time I walk it counts the number of steps I walked. And it basically allows me to keep track of how many steps I walked and if I go here and click on a button, it'll tell me that today I walked five thousand steps. Five thousands one hundred and five, which actually is not a lot, I should be walking twice as much more. It also tells me that I've climbed two floors, so i haven't done much climbing today. But quantified-self is, I mean it could be anything, it could be how much you walk, your blood pressure on a daily basis, it could be measuring your heartbeat on a daily-basis, and there are people, there is a very weird place in this world, I don't know if you've heard of it, it's called San Francisco, where people are obsessed with this kind of stuff, and there are constantly measuring everything about themselves. They've got like you know ?? everywhere and they are just measuring everything, which is why I run away from there and I came to Paris, where nobody seems obsessed by it at all. But, that's quantified-self.

But peaople are taking this quantificationfurther into analysis, and people are grouping these data together and they're trying to figure out what's wrong with them, trying to cure deseases, people who have certain kinds of deseases are building websites where they can collaborate and talk to each other and say "hey, you know, this is happening to me, is it happening to you also? I get headaches when I drink red wine, do you get headaches when you drink red wine also?". Things like that they are doing, right? These are sort of self-organizedscientific projects that are happening.

So then these projects are happening outside conventional academies, they are not happening at the universities , they are not happening at Université Marie Curie , they are not happening at Stanford University, just happening at, just people, meeting together and doing these things, right? Who monitors these projects?

17'16 - en cours Juu

How do we approve non-conventional projects? So, the thing that I want to ask about is, and actually I'm going to ask you a lot of question, I'll not provide any answers. The thing that I'm realy asking about is: how do we approve non-conventional projects?

If you decide to do a study on yourself, maybe you are taking samples out of your body, and measuring them or something. Is that ethical ? Is it ethical to arm yourself? And the society says no. It is illegal to commit suicide. In many societies at least, in many societies. So the issue really becomes how do we evaluate and monitor projects that lie outside things that are governed by law?

Citizen science, sensors, self-measurement, participant led research, that's one of the big things that are very popular. As I mentioned people have certain diseases and they make a website where people of same disease can came together and share their experiences. You know, irritable bowels, crohn disease, different kinds of cancers, a lot of people also want to form a community, right ? And they are sometimes giving each other advice and they are doing it outside of medicine and health laws and institutions.

So what is the substitute for IRBs in this question, that's something that I'm thinking about.

19'04

What about ongoing monitoring?

20'49 transcrit par Cpm

Legales tools are… So the reality is that legal tools are existed such as copyrigth law and that's drugs??? are inadequate, if they don't exist, and if they exist, they are inadequate, they are inappropriate, they are expensive, nobody likes lawyers, lawyers are expensive and they are confusing, and they really scare as. How do you mean know, how many of you have ever been in a corp? No one. And a lot of people will never go to a corp in their normal lives. I mean a normal life, does it involve lawyers? And does it involve court and yet a life is rule by laws. Right? So, it is an interestring thing that we have all these laws and yet laws don't really, you know, come in to play on our life a daily basis.

21'41 en cours par Cpm

Slide 14/10 Do no evil

So, one solution could be do no evil. You are inbound??? with that, right? Do you know do evil? That hasn't gone down very well. That is a big company that has this, think all do no evil. And they have done even evil up there. So, maybe, the thing of I, I thinking quite a bit is about just mutual respect and social contract. So how many of you ear the term social contrat? "Contrat social", here we go, french, yeah, Rousseau, yeah. So this is notion that we give up something to get something. Right? We, individual ??? become member of a society or a country, we give up some ??? return for the safety and other things that society provide. That's the social contrat, right? All be a citizen of France and France will look after me, we can other thing. This somebody laugh. Public : yes because ???

23'03

Good behaviour by another name

24'16

Importance of data integrity

26'55

Evaluating data integrity

29'37

That's the all talk I have. I think I have a lot of time yet I really want people...

35'35

Public : For me, thank you for the talk...

37'45

Come on...

40'30

Public : j'essaie en anglais ou ...

43'49

Ask me anything.

45'21

Maybe in my culture...

46'23

... I have to working a lot...

47'00

Thank you all.