Jason Bobe: So, in the spirit of our day today, I only
have three slides, but I have ten conflict-in-biases slides as a preface, and part of this is because
of my interest in the history of science and medicine.
And I wanted to set a little bit of context and go over a few things that haven’t been
mentioned today.
And these are some of the projects and organizations which I’ve worked for or have founded and
continue to do work on.
And so, a few salient biases and background: I am in the camp of being more excited than
terrified of DNA sequencing technologies, so you can count me in that camp.
And I think that this is really the technology that is the modern-day x-ray vision glasses.
And just to review a little bit of history, there’s sort of one model of DNA sequencing
adoption out there by Citizen Science which has trickled down, which, you know, it’s
driven by this chart -- which you’ve seen all over the place -- of the rapid decline
in cost of DNA sequencing, but DNA sequencing started in the elite labs only, you know -- only
this is the Wyatt Institute, MIT -- and, you know, not too long ago, 10 years ago, this
was about the only way you could get access to DNA sequencing technologies.
But, boy, is that changing.
DNA sequencing devices have iPod docks or iPad docks, iPhone docks.
They’re getting small and portable and useable and disposable, low cost.
And there’s this whole other threat that’s been mentioned just a little bit with do-it-yourself
biology and the biohacking community -- and we might call it trickle-up innovation.
So, this is a data point: 2013, UK, Young Engineer of the Year Award, has a PCR device
in his basement -- so this is the actual sort of adoption of these technologies in the wild,
and the rate at which this is happening has been really dramatic with not just PCR devices,
but the whole sort of biotechnology tool chain and low-cost laboratory devices.
And so, here’s one just from a few weeks ago that raised over $200,000 on Kick Starter
for quantified acute PCR, and there are also our communities associated with these technologies.
There are communities of practice out there, and one of the things that I do is to build
communities of practice around new technologies.
And to start on the data side, this is one of Boston called Hack/Reduce and that, for
those who don’t have the institutional resources of Google -- and the ability to actually get,
you know, crunch and process big data -- you can go now, like a gym membership, and pay
a fee and get access to big data computing power at places like Hack/Reduce.
Or, on the biotechnology side, you can go get access to advance biotechnology classes,
hands-on training, run your own experiments.
Community labs like Genspace or BioCurious in the Bay area.
Genspace is in Brooklyn, New York, and so I’ve been part of this community for a long
time.
And I’m a founder of DIYbio, and then this sort of -- one of the things that I work on
is this “Ask a Biosafety Expert,” which is -- touches on our conversations about IRBs
in some sense and equitable access to oversight.
And so, here’s a model maybe you could apply to human subjects resource or some version
of this where there are actually professional biosafety experts who typically are attached
to an institution, and they only care about sort of the perimeter of the institution in
biosafety happening there, but they are the experts in the world.
And they are providing for free biosafety services to the biohacking community through
a -- more or less a biohacking hotline.
And so, this is very much still in the prototyping stage, and we’re going V2 on it this year.
What worked?
What didn’t?
Anyways, I spent most of my time -- this is my biases -- since 2007, working on the personal
genome project, and I set this up now in four countries and a bunch more are underway.
And there are -- it’s sort of a unique set of features.
Not any one feature is necessarily unique, but taken together, our global network of
research studies and participants and scientists, I think, creates something very special.
So now, for my actual three slides.
I really, you know, recognizing that it’s the end of the day, I felt like it would be
worthwhile just to sort of pick one thing and focus on it.
And the one thing that I would like to focus on is this concept of equal access.
And I don’t think it’s ever been defined, but it should be, so here’s an attempt at
it.
And I think this, I think a style of governance, which is out there, which is where the research
study sort of -- there’s an amazing quote.
I can’t believe I had never heard this before, which was -- I’m trying to remember how
it goes -- “Nothing about me, without me.”
I had never heard that before.
Female Speaker: It’s from the Native American community.
Jason Bobe: Really?
It is incredible.
Female Speaker: Although it was written in that article with
Don Berwick, and now everyone says he said it, but he did not.
[laughter]
Jason Bobe: Okay.
Got it.
So, equal access is essentially that.
In short, it’s sharing by default.
And that -- and this is something which I think holds tremendous promise and is absolutely
a necessary prerequisite for doing actual civilian or citizen or science or being honestly
engaged in a research enterprise -- is that any data that is generated about you, is also
available to you.
And so, a new project that I’m working on with cofounder Madeline Ball, research scientist
from -- trained at Harvard, and then a software engineer Bo Gunnarson is really going to explore
this and help to assist researchers with implementing this governance in their research study and
then also rewarding them for doing so.
And so, sort of one customer of this new program which launches in one to two months -- we’re
on a private [unintelligible] right now -- is, on the other side of the sort of the customer
of this service is the actual individual who wants to participate in research and helping
to give them access to their data and do things with it, even if it’s just simply to archive
it and store it privately.
So now, this is the real slide that I wanted to get to and, as the end of the day, as just
sort of to be provocative and as a Citizen Science of research governments in many ways,
to sort of propose six hypotheses about equal access and things to think about.
And, you know, one thing that -- many of these things, to me, seem really intuitive, and
that’s why I’ve chosen them as my hypotheses.
And, I’m not sure that they’ve ever been sort of empirically studied or proven.
And maybe some of you have done this work and can come talk to me and perhaps point
me to references, but if not, it should be done.
One question about equal access is, you know, will we actually have more reproducible science
when the individual who is engaged in research study is able to do error correcting or fact
checking about what a research claims to know about a person?
And then, two, there’s this whole concept that we have about research literacy and whether
or not citizens scientists are really qualified to act in many different ways.
And how are we going to improve research literacy unless we, you know, open the kimono?
And I think equal access is an essential part of that.
And, also, how can an individual make really good informed sharing decisions without having
access to the actual data?
Number three, I think reciprocity is powerful, and I would hypothesis that, in these models,
that there would be much higher recruitment participation and retention.
Four, overall, more data will be shared, although it’ll be more varied in these models.
Number five, that we can demonstrate over and over again that this concept of cognitive
surplus is real and that people who are not credentialed actually have meaningful contributions
that they can make.
And number six, and this is one that I really should have started with, but my hypothesis
is that the sort of research enterprise will go the way of medical care and that access
to individual level, raw research data, will be a federally protected right as it is for
medical records.
And we should all be asking ourselves, why do we not demand more from the research enterprise
when it comes to the ability to request access and audit the records that are held about
us?
We do so in medical care, and there’s a very long history -- decades long history
-- of advocacy around patient-centered healthcare and the important role of having access to
medical records about that, and I think the same can be said and will be shown to be said
or will be shown in the research enterprise.
And those are my three slides.
Thank you.
[applause]
[end of transcript]