path: root/transcripts/open-science-summit-2010/diybio-bioethics-commission.mdwn

I think it's important that you guys, a letter comes from, what it actually is
that you're doing, the things you're talking about doing, providing kits, for
doing science, this idea of broadening the people that do this typeo f work
and broadening the.. Mac, making us look bad, making an entrance.

The Wilson Center has a lot of pull with the commission, and we want to get a
representative from the diybio community to testify in front of them, in
addition to a letter that would be on the record. The next one might not be
it. It could be potentially in the third one. The thing about these letters is
that they want something specific in it, they want one thing that you could
tell them what it is. This commission is sort of unusual. They used to have at
least a year about it, and they are going to make recommendations for some
sort of regulation or policy or fundamentals, or effect all of that, so
whatever sort of thsi, it's a letter, ors omething else, you really have to
define yourselves because you're going to be defined by other people.

You don't have to go into the details into what that plan might be, but you
could suggest an incentive mechanism. They are going to have interns reading
msot of the letters first, sort of as a screen, and move them up through the
process. They will read all of them, and it will be listed in the federal
register, which nobody reads, your submissions will be available on the
bioethics.gov website. They do take them seriously, it's not something, it's
not just a black hole. The issue about sort of, the difference between one a
community, sort of sign off on it, not that everything would be agreed upon,
betweent hat and sending in 25 to 100 individual letters, yuo lose some of
those issues in the individual letters, a lot of time they see it's the same
sort of idea in the one thing, they will lump those all into one submission,
so you lose that. They cuold decide to take the most creative or most radical,
they could choose the most creative one, or something.

Especially because of computer software that allows you to email 5000 people,
and sends out a form letter, the way that they deal with that is they deal
with the form letters and lump them as one submission, which has good and bad
connotations. The idea though is to get sort of that one issue across to them,
and define who you are, from the positive side. I guarantee that you are going
to be defined by some other groups and it's not going to be in a positive
light.

The three or four projects are going to be fine. That part of it, this is
actually what we're doing, and the trajectory of what we want to do, this idea
of the educational community. My first reaction to Todd's proposal that we
write this letter, actually it was Bryan's reaction, was, in the room, it's
too early, let's wait until we have something more to say. I wasn't sure if
this was the time to get the act together, to pull before September 1st, why
not ponder on this for another year, but he's convinced me, I think, in a
compelling way, if we don't say something about ourselves, at least at the
minimum level, say what we are, and the tangible what's being done, community
labs, businesses, labs, and Woodrow Wilson Sloan project, safety issues, and
sort of trying to work on that, and that's the extent of the letter. It would
be really great if in 4 weeks we could do a full-blown plan. Their final
report to the President is 6 months from.. so it will be December or January.
So this idea of a plan that you have, what I would suggest, for something like
that, is say that you are developing one, just so you know that you're
thinking about those type of issues. You don't have to say what that is,
outline it in a whitepaper format, and they might want to come back to you and
ask if that sparks an interest.

whitepaper

What is the minimum amount in order to meet the deadline? This is how my brain
works, rather than the maximum amount. We should define what DIYbio is and
what are the things are accomplished. What do they want to hear, per Bryan's
point? Well, probably safety. We're just now getting started on a small
project to start thinking about what a plan might look like- and that's
reflective of a state of being a small group, because we're doing it before it
happens. A lot of people come to these things.

What have we accomplished? Right, so, ultimately, we could have a plan, that
would be in the form of a whitepaper, in the letter we'd say, we are writing a
white paper on DIYbio safety.

What have we accomplished? We have a brand. As a community. What are the
celerebrated points? At least five kits that are in prototype and available.
There's four labs. We should be realistic- tell them that there's just like 10
projects, it's not a huge thing. Cheap hardware being used by individuals and
high schools, and community colleges. A vibrant online discussion place.
Community labs. Biocurious isn't a wetspace yet. Genspace, BOSSlab, Seattle
had one? There was a guy who has a lab, and they invited them in to do stuff.
Instead of a lab, workshop, workspace, what about talking about the gruops
that don't have spaces? Regional groups, relatively active, 12 or something.
Within three or four public workspaces, which are run by those groups. And
that's a pattern that scale for the other five. $20k of fundraising.
Businesses, there have been businesses like Pearl Biotech LLC, OpenPCR or LLC
or under an LLC, or not branding another company around it, it's a product
just right now. If you focus on the legalese then...

Soemthing I heard about Rob Carlson, that was tremendous feedback when he
spoke with the commission about biotech innovation. He has a lot of support,
he was surprised, was he has a slide in his presentation which lists all of
the small businesses that started in garages, and these were a list of
products, like the zipper, everyone was wearing one in the room or something,
and a list of the things that were completely common, and the importance of
small business. Including the mention of small businesses. So, and something
else to consider, would be referencing the security and biosecurity
whitepaper. This was from Obama's president biosafety commission- there is a
quote where it says almost verbatim, that garage biolabs are good. We want to
support the makers of things. Jason is going to draft the letter.

This is my second brainstorming session around this, brainstorming in my
experience, putting it up on a wiki, and expecting a letter to come out of it,
so the best thing is to write a draft, and it's easier to do it that way. So
here's the timeline. Have a draft by August 15th, and sooner would be better,
but August 15th is like drop-dead deadline. Do we have to post-mark it? By
pdf? By midnight of September.. so, August 15th is draft, 2-week or 10-day
comment period, and then final draft, and then we have our own comments on our
own letter. I hope we get a lot of comments. And then 10-day comment period,
and it would be important to also have when this is posted on the listserver,
have a preamble talking about all the things about Todd, and we can't assume
anyone knows even why we should write a letter, or why we should come up with
one generic letter, so that people mostly agree with it, rather than a
thousand one-off, and that speaks to the experience on how this works, then
it's not up to them for whcih one they want to bring out there.

So that's a preamble. A ten day comment period, then assemble a final draft
and submit. And then the other thing is, whether we want to talk at a high
level about why we think DIYbio is a positive difference, talking practically
about what we've done, 2 years old, 2000 people who are semi-active.

Hugh, mydaughtersgenome

it's retroactive applying DIYbio

bioart, that's DIYbio

anything outside of an institution we get credit for

Hugh Rheinhoff, theres going to be a merging of Quantified Self and DIYbio,
and when people realyl start getting into plucking their fingers, it's going
to get much more into DIYbio, we should ask this guy abuot uric acid level.
Derek Jay. He's on our group quite abit, and he has Gout, he has all this pain
in his foot, chopping off his feet and hands adn things. So he's trying to
reduce this disease, and it has to do with uric acid in the blood. So you
should reduce the diet- don't eat red meat, replace with beans and veggies. He
wanted to know the concentration of uric acid in his blood, so he found a
sensor from Singapore, it's a microfluidic device, so he's doing his own uric
acid quantification, and the recommendation from his doctor has increased his
uric acid, and lentil makes a spike. So he's been doing this combinatorial
food dietary regime, to figure out what's the optimal diet. It's pretty neat.

Quantified Self meetup

techshop

About a high-level, and this is just, these are actually points that Mac talks
about, I think we could adopt them, tweak them, which is the first one is- why
is DIYbio important? It's a cultural interface to biology. Show how there has
been a positive effect on people's lives already. It's an interface to the
public at large. It's convoluted no matter how I say, people are afraid of
DNA, and that's dumb. Traditional science outraech isn't working right now,
and DIYbio can fill in that gap. DIYbio is important is because our culture is
afraid of biotech, and we need to get over our fears, and DIYbio will help
distribute good understanding of biology throughout society. Two, it inspires
people to become biologists, not just become amateurs but also professionals,
because it lowers the barriers. And thirdly it's a driving force to invent new
tools, and they are categorically different than what existing science is
based on. The Spikerbox is a good example. The arduino, my whole schtick about
it, it took outsiders to do it. New tools, new human capital for biotech, new
cultural interfaces. How do we summarize that? Innovation, citizen science,
public interface, STEM buzzword, the American Competes Act is about STEM, to
get more people involved in sci/tech and math education, to get them involved
in those issues. Nano still-- DIYbio stands for STEM. And the other thing too
is that, while the first sort of, the first hearing didn't really focus on
ethics, they are going to start focusing on ethics. The first hearing sort of
gave a bad impression on what they were supposed to do, it was an introduction
to the members what synthetic biology actually is, so I imagine this next
hearing is going to have a lot more ethical issues about what those concerns
are. Some of the feedback was that the members wanted more religious leaders
to bring them in, and what their concerns are. the one person that spoke on it
kind of brushed it off, and it's not really true that they don't have
concerns. You don't have to address the ethical issues. The safety and so on
falls under that, you don't have to get into meaning life.

How many things can we emphasize? Come up with one sort of real concrete
recommendation. They made a point about this- they want one thing that you can
tell them that they will do. Buy our kits. So you start with that, whatever it
is that we come up with, maybe it's one or two things, and then sort of go
into the other things after that, so that you get that part out there so that
they have read at least that stuff, and then introduce what you've done, and
then go into the details of the other things.

So, well, let's do it a different way, what- what would be, anybody have ideas
for what, Presidential Commission, looking for action items, are there
particular resources that you wuold want government to make available, one
thing to ask for. There are some things that you want them to not do, which is
important as well. Or maybe there's something that you think they will come
down on.. "please don't shut us down". And then you can go into, and because
we're looking at the safety issues, because we're in contact with the FBI...

innovation incentives, for an ethics commission?

Garage biology, innovation, small businesses, it's the ethics of innovation. I
would like to see the endorsement by the commission of garage biology, maybe
targeted towards high schools, and ti would be great if the rest of the
government could support it. Soemthing that's like, dear president's bioethics
commission, would you please assess the tradition of innovation in America's
history, and what do you think the role of garage biology would be in the 21st
century? You could source frmo the Institute for the Future on the BodyHack
competition.

They would only be interested in addressing some policy/ethical sisue. One
thing might be to ask a question of them. Is there- what is the tradition of
American innovation, and what will be the trajectory of biotech in the next
century?

I'll send around to the Office and Science and Technology Policy, they had a
"please tell us your ideas", they had a ccall from the president on what they
should look out for emergent technology, because I like this idea that we can
link that to that as well, that helps us, it's linking a lot of proejcts that
the white house likes into one sort of thing as well, and that's positive. So
what is it that the Office of Science and Technology Policy. They put out a
request asking, what sort of innovations and in science and tech, and .. that
was just sort of a call, because the president tasked them for looking into
innovation and how to make America innovative again, so they said please tell
us the ideas.

So I want the commission to figure out hwo to overcome the challenges- and we
want them to do it for us. Help us build a culture of biotechnology
innovation. Reference Rob's slide, reference the security commission,
reference Obama's inaugural commission. Framework or culture of garage biotech
innovation. But when you say help us, then it just means that they, I am
imagining that they are going to write this big report, the action item I'd
like to see is something that endorses garage biotech innovation. They are
going to make recommendations. If you look at the 9/11 commission, it was
volumes. What's the scope? They are going to sort of be policy
recommendations, things that the government that should be doing to address
the concerns that they found through this.. they could say that the EPA
monitors all garage innovation, it's not ethical, but they might say it. This
is the issue, we recommend that the government and the office of the
whitehouse create a new presidential thing, that analyzes the religious
aspects of synthetic biology. It will be things like that. Congress and the
Whitehouse will say FU or we're going to do it. There's no authority, they are
just recommendations. Most of them never get implemented, the 9/11
recommendations never got implemented (mostly) but sometimes they do, so it's
always better to air on the side of let's get involved in case they do
implement the recommendations so you get on the positive side. It's beyond
just endorsing garage biotech. This idea of enabling this culture of this, is
sort of, a positive culture of biotech innovation. I would steer away from I
would want this X amount of money. They are going to screw it up. It's
enabling innovation in America, figuring out ways where we go from being a
fringey thing where we're scared to talk about, which is why Todd and Dave
approached me, the only groups who have taken interest in DIYbio, and having a
close relationship with law enforcement now is that- community labs or
anything like that, is it legal for me to share this with anyone else, can I
do this or do that, and there's all sorts of legalities that nobody knows? If
you have Ed showing up to your garage lab, it's his job to enforce the law,
and he knows it a lot better than we do, and it's bad if the only person who's
interested in this are the people who can put us in jail.

being supportive of innovation outside of traditional settings, part of that
is that we need to build that framework.

If I am Big Pharma, or if I am an NGO that doesn't want synthetic biology, my
campaign is going to how to get my bang for the dollar as far as getting to
policy and so on, and DIYbio is an easy target. That's scary, they have an
incentive to do that. It's easy to deflect that. DIYbio got brought up
numerous times, and that's good and bad, but it's more on the bad stuff.
Framing an issue is someo f the work that we have to do in the coming years.
So that's why we need the support of the commission (because Big Pharma and so
on has an incentive to stomp us out).

The public hates the term already- synthetic chemicals, they hate that. And
then you tack on DIYbio to synthetic biology, and it's in this area where
people are like wait a minute, so the other side of this is here we are, we
are making yogurt or whatever, or teaching people in science, we're not
creating new strains of the ebola virus, or whatever it is that peopel go to
in these far out side of things, it's also the reasoning behind this.

What's the otucome of the poll in synthetic biology? They tried to use
constructive biology. I think most people knew that the name is bad. But when
we did our focus group, we were actually a little surprised, we thought that
people go to thep layign god model, but they went to the synthetic portion.
They don't like synthetic, chemicals, cancers, and it was sort of this weird
thing that none of us thought they would go towards, and then you start
bringing up the applications, you can ratchet that down, and biofuels and
things like that, but the words matter especially when you don't have time to
sit people down and explain what it is in detail. It's already out there, so
trying to define it is counter-productive, it's more important to say what you
guys do.

Organic chemistry was originally called synthetic chemistry, and it was about
synthesizing organic compounds. Eventually ebcause they were focused on
organic compounds, organic chemistry stuck. They didn't have the techniques
for inorganic compounds so that's why they didn't think of that.. there were
certain chemistry that.. only intrinsic things that you have, and then someone
said yeah you can create it.

Nature had a publication that said that DIYbio is dead. But the public doesn't
read it. They don't erad much, and the other problem is that most of the major
newspapers have gotten rid of their science editors, the science sort of, that
hey are reading, is sort of sporadic, and it's usually bad, and it's not
accurate, so you have to take that into account. If you get one bad story in a
major publication that people read about, it gets picked up by the wire
services, then random blogs pick out random pieces, and it snowballs into
these issues. Europe has a different slant on how they report on synthetic
biology than the US does.

As far as names go, we've used non-institutional biology, that was liked.
Garage biotech. For defining DIYbio, the word, the citizen science is pretty
psoitive, because it takes- the biology, it's sort of sometimes an issue, they
talk about living thinsg, but this idea of citizen science. bioblitz