everyone we're about getting ready to start with our next panel just a few
quick announcements not sure if everyone's heard but we are in
partnership with the O'Reilly security publications and we are going to be
putting together a book about biohacking we will be accepting entries until
January 31st 2018 and these entries will be about a chapter during length and if
you are or if you are able to put in we are trying to put in on that hard date
for a quick edit and submission for publication hopefully in time to have
copies ready for next year's DEF CON and if you are interested you can email
your entry to I'm going to spell it out because I cannot pronounce it H-A-R-A M as in
Mary capital N as in Nancy zero zero capital R
H-A-R-A M as in Mary capital N as in Nancy zero zero capital R
at protonmail.ch I'll be more than happy to show you how it's written
also we are collaborating with a few other villages this year with the darknet
group we are doing points for the darknet village where if you have an
implant your friend has an implant or if he just make friends with someone today
who has an implant you can scan and get points for the darknet village for security we're letting everyone sign.
everyone know, all it is is just identifying that it is in fact an implant. Any security
or information is immediately deleted right after it's scanned. As well, we are working
with the IoT Village. They are doing a medical device workshop. If you are interested in
tinkering around with a few medical devices, definitely head down to their village and
they'll be able to tell you when the workshops are set up.
Finally, we have some lightning talks scheduled for this evening around 7 o'clock. If you
are interested in giving a quick little 10 minute talk, please find one of the core members
wearing a heart here and let them know that you are interested and what the title would
be. Now, without further ado, I'd like to get the panel started for ethical implications
for biohacking. Here as our moderator, I'd like to introduce our panel.
Here one of our original core members with the Biohacking Village, ladies and gentlemen,
Amir Kay.
Amir Kay
Hi, everyone. By the way, Nina assures me that that email that Harry keeps giving out
is absolutely not being given to us by the social engineering. That would have been
a good one though.
That's my real email.
Yeah. So that's a real email allegedly, if you can believe anyone here.
So...
Yeah, really honest.
So, by the way, I don't know if you've been curious,
but a lot of you have come to a lot of these talks,
and I know some of you just got out of bed to make here.
The reason we're all tethered, if you're new, you don't know,
but, you know, for potential security reasons,
we don't really use wireless mics,
so it may seem very old school that we're all tethered,
but just in case you're wondering, you're not familiar with that, that's fine.
The other thing I would say is I've had calls with all the panel.
I know some of their sort of thoughts.
I'm much more interested, actually, in your thoughts.
So what I asked the panel, and they agreed, was to...
I know your alcohol level's maybe quite high still,
but what I would like you to do,
we're going to go and introduce a very great, diverse panel,
but while we're doing that, if you could multitask,
which our friend Adam Gasley will tell us from UCSF you can't do,
but I'm going to ask you the impossible,
which is while you get the intros,
just think about what you would like for us to have talked about,
because I'd like to actually get you to shout that out
to make sure...
All the panel was happy to pivot,
and so we're interested in really addressing issues that are important to you.
And because we're a very informed audience,
we'd rather talk about things that are important to you
than what we think are as important.
So please think about that while I go through the panel.
So I'm going to get the panel to introduce themselves.
We have Amy first, then Amber, then David.
So let's start with you, Amy.
Can you kind of tell everyone what your background is,
what you're up to?
Yeah, no worries.
So my name is Amy Cruz.
My background is I have a PhD in neuroscience.
I'm a former DARPA program manager.
So I've been in the defense industry for quite some time.
I'm currently the chief scientific officer for the Flatbush Institute.
So you guys may have heard David talk yesterday.
We're an applied neuroscience institute,
so my focus at the moment is taking all the fantastic information
that's already existing in the literature
and the community that we know about
and actually turning it into applications that people can use.
Thanks.
I'm going to set the bar pretty high for you today,
so I hope you're ready.
Hi, I'm Amber Case.
I studied a field starting in 1993 called cyborg anthropology,
which is looking at cyborgs and it's really looking
at the extension of how we exist as humans through our tools
and how that changes us over time and how technology
is affecting culture and things like that.
And then I started an conference called Cyborg Camp in 2008,
and that went to a few different places.
We had one at Media Lab, one in Toronto, one in Seattle,
one in Seattle, one in Portland, Oregon.
And of course, one of the sessions in 2010 was an RFID installation,
which one person volunteered and a few people looked on terrified
and some people were really excited.
And we kind of talked about the implications of that.
I also did a few different residencies, one in Banff, Canada,
where I met somebody who got two RFIDs installed,
which I thought would be a great idea to confuse.
And then I did a few scanners, two instead of one.
I met a number of different people who had magnets installed
in their hands and tried to talk to them about that.
Right now I spend half of my time between Portland, Oregon
and Cambridge, Massachusetts.
I'm doing some work, I'm doing a fellowship at the MIT Media Lab
and the Civic Media Group.
There's a lot of open source and how we can kind of democratize
what's usually shut off from us by all these kind of enhancing technologies.
And then I'm also at the Berkman Klein Center,
for Internet and Society at Berkman Law School,
where we're trying to talk about the real implications of these technologies.
That's all I've got to do for now.
Go ahead.
.
I'm David Sheen.
I'm a dog breeder.
I don't have a PhD or anything.
.
.
The amount of time you save, that's incredible.
.
.
So I'm a dog breeder.
I want to do a better job at it, so I learned genetic engineering.
I built an animal genetic engineering lab for my shed.
And so that's what I've been doing,
and then I kind of got involved with
and all the crazy stuff he's doing.
And sort of crashed out into the rest of the biomagnet community
and everybody in places like here.
And so I've been contracted out by a few different biotech companies
to work for them and consulting for biotech companies and stuff.
But it's all kind of crazy.
.
So that's kind of scratched the surface, really,
what these three panel members are up to.
So you can see they're all very interesting things their own way.
So I've got you to think, hopefully.
I don't know if you did.
So what I'd like to just hear from people,
there is a mic that's on as well,
but you can shout out why are you here and what you want us to discuss.
Now yesterday many talks and today talked about,
sort of mentioned the ethical sort of implications.
And it seems that technology is always going to be ahead of the ethical framework.
So, you know, the ethical framework is going to become more and more important, right,
as these things really impact our lives.
So I think it's kind of an obvious kind of issue that we have.
Does anyone have any thoughts that issues they would like to have had us discuss
that they thought would impact them and they'd like us to discuss?
Yeah, we've got one here, then we'll come to you.
Oh, I'm sorry.
I thought I was supposed to go to the mic.
Sorry?
Is the mic working?
It's supposed to be.
Hold on.
Yeah, thanks.
It's working now?
Yes.
Thank you.
Sorry, I thought I was supposed to go to the mic.
Yes.
Okay.
Okay.
Good.
I'm Victoria Sutton.
I'm giving the workshop on street law for biohackers at the end of this village.
And I had a question.
I have lots of questions, but one I'd like to ask is, David Ishii,
I read about your interaction and I was wondering,
it wasn't clear if you actually had to deal with FDA or not.
I'd love to hear about your experience.
And how they contacted you.
Did they give you a letter, the usual introductory letter?
Or what did you have to do to deal with them and your interesting project?
David, if you hold on, we'll cover this.
So we'll get the ideas and we'll go through them.
I'm making notes, okay?
All righty.
So FDA, David.
Did you have any others you want to tell us about or will that do?
You're welcome to give more ideas.
I got a lot, but I don't want to take up.
I'll come up later if you run out.
Okay.
Okay.
Thank you.
So as we get more emerging technology,
I'm wondering how patents and ownership go over,
especially when we're talking about things like genetic elements
or implantable technology that might be done to circumvent EULAs and things.
How might we create frameworks where we can operate and understand that?
Thank you.
So someone else coming up.
Please feel free.
Such polite biohackers.
Not like these other people.
As we get a lot more powerful tools in biohacking,
I'm curious to know what you think the role of the biohacking community is
in terms of leading the conversation about safety,
especially given that regulation is likely to be slow
and the tools are likely to get really powerful.
Thank you.
Great.
Bringing it down a bit more specifically,
what is your opinions on personalized DNA or personal DNA synthesizers,
citing the fears of their recently synthesized horse pox
and possibly other viruses, gene drives, et cetera?
Keep going.
Amber, I hope that you can comment on the cultural influences on cybernetics,
that is,
the influences shaping why people are doing these things to their bodies
and what they understand themselves to be doing in context.
So kind of as biohacking advances and as we get more advanced technologies,
just kind of wondering about whether or not you guys think that there will be an elitism
or a dichotomy between those that have these advanced biohacking technologies
and those that don't.
Great.
It's interesting.
I'm noticing some of the questions have kind of come up yesterday.
Yeah.
We've got one more here.
Mike, then we'll come to you.
One more.
Go ahead.
So as we progress from kind of the theoretical ethics of what we're talking about,
what we should and shouldn't be doing,
and we progress towards more normative ethics of imposing rules within a community,
how do you see the different roles between the DEFCON-type biohacking community
and the other organizations
that would impose regulations or norms?
I'm not sure DEFCON's ever going to impose anything, but go ahead.
If they do, by the way, if they do, we're going to disobey, right?
Well, it's actually a feature I didn't know what I was going to ask.
Well, I would just like to know everybody's thoughts on what do you think about the types of people
who are just like, I don't give a shit about rules, I'm just going to do what I want to do.
I don't give a shit, people.
I don't think I've met anyone like that, definitely.
Let me just, hold on, I'm going to write this down.
Fantastic.
And if your brain kicks in, if you're doing some stimulation or something halfway through,
it's still time to ask us to go through things.
So maybe we'll start actually with stuff that's come up.
I know we're going to talk about other stuff too, but David, how about starting with you and the FDA?
Have you had interactions with them?
No.
It's easy to still be alive, so, you know.
So how much time do we have?
So I contacted the FDA, which, let me tell you, is stupid.
I came into the idea in a pretty naive way, thinking that, okay, well, I'll just, I was learning the techniques,
but, you know, the hard part, right?
And that I would then, you know, do what I needed to do, you know,
because I didn't think things were good.
I thought it would be okay.
And I would just go through the regulatory process, and I'd be fine.
And at first, actually, it was very nice.
I called them because, like, I started Googling shit.
It was like, okay, call this number at the Center for Veterinary Medicine before you start selling genetically modified animals.
So I called the number to talk to people and set up a few meetings, and they were actually pretty nice.
And so before the time when I was just like, okay, I want to do this and make a dog that's different and do the thing,
they were fine with it.
When I started talking about, and then I want to make a kid so hundreds of thousands of other dogs can do it,
they did not like that.
It started shutting down.
And so finally I was like, hey, look, if we use CRISPR, there's no, like, because the way they used to do it,
from the old regulation was that the regulated article is the transgene itself.
So there's no transgene to do genomic edits.
There's no regulated article.
It's just a dog.
That's what it should be.
But they changed it.
So I commented to them.
I was like, hey, if I make this genomic edit in a Dalmatian and purify for your ischemia, then there's no transgene.
So it's not regulated.
And I sent this to the FDA.
I was like, this isn't regulated.
Right?
So two weeks later, they changed the regulation.
It is now.
Right?
You never ask the regulator, hey, this isn't regulated.
Right?
So you didn't get bounty, bounty money or something?
No.
And so.
We don't find a way to speed up the process.
Yeah.
Just ask the regulators if they're regulating enough.
And so.
And so.
So they only have like a bunch of rounds.
It's clearly not focused on safety or risk, because like the document, 187, their guidance
for industry, a new one, on page three at the bottom .
Is this being seared into your brain?
It specifically examines random eugensis.
So I can take dogs for example,
part of the radiation,
and pregnant a female dog,
have a litter of mutant puppies,
and release them with a yellow tongue,
breed them to wolves,
and the FDA doesn't give a shit.
But if I use CRISPR to cure a disease,
that's a big deal.
The way they have it right now,
that dog is legally a drug.
The animal itself is a drug.
And any puppies it has are drugs.
And they have to all,
like if I have a litter of 12,
6 of them are genetically modified.
Even if all you did was correct a point mutation,
they all have to now go through drug trials.
And separately, each one has to get an IAD,
each one has to get an NAD,
each one has to go through
a completely clinical veterinary drug approval.
The dogs.
The dogs are drugs.
So you're hollow.
Yeah, absolutely.
Yeah, that's just not right.
Yeah.
Tell them how much that costs per dog.
Oh, yeah, so like,
even just to talk to them,
get an IAD,
it's 100 grand.
Per hour dog.
And so, and that's annually.
So it's 100 grand a year per dog
while you're going through the process.
And that's just the IAD.
The NAD has its own fees,
and then all the testing that they want to do
have their own fees.
And it's completely bullshit
because they're not worried about the risks
associated with,
with, oh, what if you have an all-party mutation?
Or what if this mutation that you do
is something different?
But it's, it's,
they're not worried about it at all
because they specifically examine
the grand immunogenesis.
They don't give a shit about hybridization.
They don't give a shit about anything.
So it's not about risk,
it's about controlling
who has access to the technology
and what portal they have to the patient.
Amen.
So how, when you called up,
I mean, did they have much experience
with random people
not from institutions calling them?
Well, no, I mean, like,
you know, they're used to, like,
Pfizer and stuff, right?
And so they told me,
you know, I know what they're doing.
So, so, like,
we had to have all kinds of meetings
just to figure out
who I needed to meet with.
You know, there's different branches
of this thing now.
And so, you know,
like, some people, like,
the hand animal,
some people, the gen,
the parent,
but it's not really
the crossover.
And so,
it was a,
it was a big deal
that, like,
when you try to talk to them
about tamoxification
or sharing all the contours,
they want me to try to own it
so they can just own me.
So,
so,
I will,
I will say that
we could spend three hours
discussing the interactions
with FDA.
I've actually run meetings
for days with FDA
and, you know,
pharma talking about
their interactions.
So, I don't want to get
too derailed by that,
but what I would say
is what that tells me
is the challenges
that we have
that our regulatory bodies
are not nimble
or any part of government,
really,
are very nimble
in keeping up
the space,
the speed of technology,
right?
Oh, definitely.
Definitely.
We're regulating
genetics as drugs
and they just,
they're not
structurally similar
in, like,
how they're distributed.
Like, you can't just
go up to,
you can't just go
shut the door
on the factory
and say,
okay,
we shut it down.
Okay.
So, now,
David's been doing
lots of other interesting stuff,
but I'm going to move on
to other topics
and we may come back
to all that.
So, the next question
was requested,
was patents and ownership
and ethics of that.
Who wants to take that
on the panel first?
What are your thoughts?
In the context,
in the context of genetics
or in the context of,
of,
what was the?
It was a genetic
set of plans.
Okay.
You can do stuff
that you want
but you don't even
have the tools
to get that.
Right.
Right.
So, it's,
it's actually
an interesting
space because
it's another
place where people
are completely
unprepared
to,
from a regulatory
or,
or patent
space to talk about.
I was actually
going to,
it riffs off a little bit
about what David said
with the FDA.
When I was at DARPA,
we had started
the prosthetics program,
right?
Which is awesome,
right?
Like helping,
you know,
wounded soldiers
restore function.
The medical devices
group in the FDA
had no people
or knowledge
of,
of how to regulate
implantable devices
for the purposes
of that kind
of restorative function.
Right?
It was,
you know,
it was just
a completely new space.
So, I think
it's,
it's a question
of,
you know,
you know,
and unfortunately,
right,
it's the,
it's the chicken-egg problem.
Do you want to ask
the question
and unleash the beast,
you know?
Or do you want to,
you know,
let somebody else
make a,
make a run at it?
I mean,
I think
unless there is
a large,
I mean,
in the case
of the prosthetics
program with DARPA,
there was
an industry
provider,
right?
And a university
provider that wanted
to go after it
and actually
produce it.
And so,
they were concerned
with actually,
you know,
getting some
intellectual property
protections around it.
But I have not
seen
a great deal
of
intellectual property
protections around
those implantable
devices
unless they're
from a big,
and I think
it's because
of the cost.
I think it's really
because of the cost
of protecting
the information,
the cost of actually
going through
the regulatory process.
I mean,
it was only because
it was part and parcel
of those programs
that they were actually
able to afford
it.
The universities
and the researchers
would never have been
able to afford
that process.
Yeah, go ahead.
Right.
Right.
You know,
I like to tell
people that,
you know,
fortunately,
they're not,
fortunately,
I don't think
they're tracking it
that closely.
I mean,
a lot of the,
a lot of the work
that's been done,
I'm not familiar
with the amount
of patents
that were filed
in that space,
but a lot of it
is for government
purpose rights
and then the researchers
themselves are allowed
to go at it commercially.
So it may be the case
that if it has a,
sort of an,
I'll call it
an off-label use
for lack of a better term,
but I don't necessarily
know that they'd be
interested in going
after individuals
in that way
unless it was
somehow disruptive
to the larger organization
that had gone after it.
I hope that's helpful.
So your question
actually brings up
something.
I think one of the things
I talked about
I think with Amber.
So ownership,
let's take ownership
not patents.
You know,
most consumers
who are just
giving their spit
to 23andMe
have no idea
that they're not owning
that the 23andMe
is monetizing that,
right?
And really
there's a big question
about why shouldn't
individuals own
their own DNA,
right?
Why shouldn't there
be a marketplace
for that
or they choose
who, you know,
so that's definitely
a huge area
that's still
not got that.
Amber,
I think you talked
a little bit
to me
on the phone
about implants
and others
and can you talk
a little bit
about your thoughts
about that
and ownership?
Sure.
Well,
I was working
for a wellness
slash healthcare
company.
They hired me
out of doing
this little startup
that I had done.
So I got to go
to Nashville, Tennessee
a lot.
Of course,
I ended up talking
to people on the plane
next to me
constantly,
you know,
hey,
what do you do?
So I met this one guy
and he said,
oh, well,
I work for
a pacemaker company.
I said,
oh,
that's
great.
So these things
last about 20 years,
right?
He said,
well,
actually,
all of our new models
in order to increase
market share
and make sure
that we grow
as the required way
as a publicly traded
company must grow,
we now make pacemakers
that last for maybe,
you know,
four or five years
because it's very nice
to get 30,
40K at a time
for the take out
the thing,
it's now outdated
and put the new thing in,
not to mention
all the security issues
they're running into
because they're putting
things like
Bluetooth
and stuff
and Wi-Fi
and connect to
grandpa's hotspot.
Great.
This really,
really bothered me
and it bothered him too
and I said,
doesn't that seem
unethical to you?
He said,
yeah,
but I don't have a choice.
My choice is
you don't have a job
or you have a job.
The company has to grow
as required
by the artificial intelligence
that owns us
as publicly traded companies
that must grow,
right?
So this was the big issue.
I said,
now it's a subscription model
that you have to pay
every five years
for your life, right?
The whole point
of entering into a society
is to give up some rights
in order to get others, right?
Well, how many rights
do we end up giving up?
And if people have
a lot of money
from the retirement accounts,
a lot of money
from health insurance,
of course they can get
a new implant.
And I also thought about
the, you know,
cochlear implants
and things like that
and these hearing aids
that now have Bluetooth
so you can turn off
your hearing
or, you know,
you can play music through it
which is kind of nice
but that can also be hacked too
and you can get somebody
into a horrible feedback loop
and have to turn it off.
So I was kind of thinking about
there's, you know,
and as an anthropologist
all I think about
really is social class.
It's, okay, well,
I've got somebody
who would normally get
a 20-year pacemaker
and this is fantastic
or 40 years
or something that's stable
and now because I don't
have enough money
I can't go in
and get the next version
of the pacemaker
and I die
and there's no controls
around that.
In cyber-organic anthropology class
we got to write a lot
of science fiction
as our assignments
and, of course,
I wrote a story
called Designer Jeans
which was all these kids
in a really wealthy school,
their parents were constantly
buying CRISPR-like solutions
for their kids
so every season
you had to,
oh, well,
these are the new years
for the season, you know,
so immediately
you would see
that, like,
the person wasn't up-to-date
with this stuff
that would be $10,000.
We see this now
in South Korea
is people get,
like, plastic surgery
as a birthday present
and you put your picture
with your resume
so that people can see
whether you're
attractive enough
or not to be hired
in a job
because it's this
trying to pretend
like it's not
two generations away
from an agrarian society
and we have to prove
that we're really,
I think, you know,
after spending some time
over there
it was really intense
and so I'm concerned
about the social class
issue of
here's a bunch of people
that can fix
their own problems
not only can they get,
they can go in
and get their DNA tested
which is owned
by somebody else
but then they can subscribe
to all the new,
all the new systems
that can improve their life
and then you have
a bunch of people
who now have
a lifespan
of maybe 30 or 40 years
and then you've got
a bunch of people
who can live
for 80 or 90 years
and there's this,
like, class divide
of short-term
disposable robot workers
that are put on pause
and work three jobs
to barely make ends meet
and then you've got people
who can live
for a really long time
and then you have
even worse
the kids of these
really wealthy people
who take care
and take it for granted
that they can just
fix anything they want
and so when I,
when I was,
you know,
put my data
into 23andMe
there was a time
where you could take out
a lot more of the raw data
than I think you can
right now
and I was able
to shove it into
all these open source
analysis tools
and I was trying to find,
because my mom has MS,
I was like,
well,
do I carry that gene
and am I able to absorb
vitamin D from the sun
and I found out,
oh yeah,
I carry this horrible gene
that means that I'm
very susceptible to this
but now I can,
you know,
that making what was
informally invisible
visible
gave me a lot
of empowerment
but without that
and it's just being used
for somebody else
and I had to run it
through all these
weird graduate level
processes in order
to get that data out
so I think there's this,
this issue
that you have
all these people
giving away their data,
they aren't getting
any visibility on it,
they aren't owning
any of their data
and it's totally not fair.
I had a friend
who is,
it was found
that he was HIV resistant
and he was like,
so they took all of that out
and they said,
well now we can synthesize
some drugs based on you.
They gave him a patient number.
Does he get access to,
you know,
does he own any of that?
No.
You know,
so they made just
tremendous amounts
of money off of him
and then you have farmers
who they've got
these genetically
engineered seeds
they have to subscribe to
and those seeds
can sometimes pollinate
with other seeds
in other fields
and cause those seeds
to be genetically modified
and then there's been
these companies
that like Monsanto
will actually sue
those farmers
like,
well we found genetically
modified seeds
in your field
and you didn't buy
the subscription model
to the seeds.
It's like,
these seeds
from this farmer's field
infected my seeds.
They're like,
well you still have to pay up.
And I was like,
well we can't really
contain the pollination
of these seeds.
So my biggest concern
is that you're going to have
a whole class of people
kind of like now
that has access
to healthcare
and implants
and things like that
which is why
I'm really for
people doing
their own implants
and making a 3D printed
prosthetic leg.
The only issue
is that once you have
a community like that
that does it
kind of underground
for really cheap,
you have to have
a support network
that says,
okay,
well I put something
in my hand
and now I have a microtumor,
I have an infection,
I need to get it out.
Is there an underground
department that I can go to
that I can get this
taken out in a safe way
that I don't have to go
to the hospital
and have them either
sue me
because I have some
government property in me
or that's not going
to alert any authorities.
That's going to be
able to do that surgery
for me
at a cheap level,
kind of off-grid.
Do we have to go
to other countries for that?
Do we have to go
to some back alley for that?
We're going to have to see
that whole underground market
that does this on the cheap
and then all sorts of ways
of deflecting
any authority's detection
of these systems
because right now
it's not enough
of a profit loss
for these large companies
to go after people
but at some point
if it's a gene mutation
or some nice thing
that prevents you
from having a disease
and you got it off market,
then hey,
they lost $100,000.
I can't imagine
now you'll have celebrities
that'll say,
well, I'll buy
one of those designer dogs.
That sounds great.
I can get one of these dogs
without diabetes.
Fantastic.
But it'll be really
cost prohibitive
and there's money for that
and it comes from
these tiny little places
and that's my big concern
that there's no
overarching authority
that says,
hey, this is unethical.
We're going to create
an even larger class divide
and a whole subclass
of people
that do this off-grid
that we can't
we can just raid.
Imagine getting raided
as an off-the-grid
medical facility
and all the different ways
that you're going to have
to hide what you're doing
and that sucks
and unfortunately
it goes into science fiction
but now that's today
unfortunately.
So these are the things
I'm concerned about.
There needs to be
democratization of this stuff
because look at what we did
with like,
yeah, we had GMO food
but now we can feed
more people.
Okay, right?
Or the whole point of
let's say a democracy
or having some rights
is that you have access
to these things.
Like you have access
to the new technologies.
We don't have things anymore
really like a Bell Labs
or like the idea
of electrical grids
that everybody gets electricity
and yeah,
we can subscribe to it
but it's pretty affordable.
We need to have
that same thing going on
for this new generation
of medical implants
and devices
and genetic processes
or we're going to get
in really big trouble
with our future selves
and it will suck horribly.
And right now
it's just too
goddamn profitable
for people
to be able to
right now
so they're hoarding
all the money
and consolidating
all the capital
and I just think
that how that works
in the past
isn't very good
and democracy
makes things
a little bit more stable
over time
so we're just kind of
shooting ourselves
in the foot.
It's hard to tell people
that who are CEOs
who make a lot of money
because they have to
respond to their shareholders
and they have to grow.
So your question
really opened
the giant can of worms, right?
So it touched on
a few topics
that we've been talking about
and we've been thinking about
so that's great.
Thank you.
I'll combine two of them.
I'll combine next
the safety implications, right?
And the
don't give a shit people
kind of question.
So how do we deal
with the biohacking community
and their sort of
ensuring safety
and how do we impose rules
like someone said
to folks
who don't give a shit
about rules, right?
So I've been thinking
about this a little bit
because
you know
as someone
who's transited
this space
from both of
I would ask
I would call
an over-regulated
environment
which was
you know
working in defense
and trying to get through
institutional review boards
and things like that
to work
in what I considered
mission critical
slash
life-saving applications
and the struggle there
all the way to
advising my friends
and colleagues
on the best placement
of TDCS electrodes
for you know
the kind of stuff
they're trying to do, right?
So I absolutely believe
in the democratization
of this space
and so I was wondering
I was playing with
the idea of
you know
with the
you know
there's obviously
you know
even the word
IRB
institutional review board
you know
gives me hives, right?
Because of you know
sort of dealt with that
but I was wondering
is there
could there be
an equivalent
in the biohacking community
of some type of
peer-reviewed
you know
review board
where it was not
binding in any way
but you
you got the input
of folks
who may be
actually specialists
or
willing to
to transit
that space
and I think
one of the challenges
has been
and I'm going to
criticize my own
group of people
right?
So I'm going to
criticize researchers
in general
maybe people who
consider themselves
professional researchers
I think they've been
hesitant
to cross the threshold
of interacting
with
you know
sort of
do-it-yourself
for biohackers
for fear of
I don't know
their own
research credentials
or you know
nobody's going to
take away my PhD
if I help my friends
like
put their electrodes
somewhere
you know
I give them
the same caveat
that I'd give
anybody else
that I
you know
whether I'm
recommending you
like eat something
or you know
put an electrode
on your head
I think it's a
you know
it's a
it's a conversation
that we're having
I have a colleague
Zoran Popovic
who's done
the work on
Foldit
it was that
like crowdsourced
protein folding thing
and he was the one
who insisted
to Science Magazine
that all of the
researchers
who had
participated in that
crowdsourced activity
get their name
on the paper
and I think we need
more researchers
you know
I don't necessarily
think that
it's
it's entirely
incumbent on
the biohacking
or DIY community
to figure that out
I think it's also
incumbent on
researchers
and medical folks
to cross over
and start interacting
in a better way
so is there a way
to do peer review
is there a way
for researchers
and scientists
to share methodologies
that don't necessarily
impose anything
on folks
who are doing that
but want to get
into that space
so a couple of comments
on that
first of all
would the
you guys
that are going
don't give a shit
people
would you ever
think of submitting
to an institute
review board
I would assume not
when I did
the circadia
implant
like we actually
contacted a doctor
like a neuroscience
professional
and we just said
hey can you
can you just give us
some advice
highly off record
just do it
this is about placement
we just want to know
if this is going to kill me
that's all
right
and he was like
I'm not answering
look dude
I just want to know
if this is going to kill me
that's it
is this going to kill my friend
and he's like
I can't comment
dog
I can't
so it's not that
we wouldn't talk to them
they won't talk to us
and it makes us feel
really sad
yeah
let me address it
from a different
scientific perspective
because there are
those academics
who will say
I personally
don't want to participate
and they have the right
to not participate
however there are
committees
at the universities
who will look at
an academic
and say
did you participate
in this
you submitted this
when you asked
for a promotion
or for tenure
and now we have
a problem with you
and so
they're not
they're never
they're never
going to get clarification
until he says
hey can I do this
are you guys
going to throw this
back on my face
can you tell us
more about
what we're going to
throw on your face
later
it's all about
liability
because if I said
oh yeah
you can implant
this right here
and it won't kill you
and then it kills somebody
because they had
some other issue
in their system
that was unique
to their genetics
and they die
you personally
are on the line
because you said
that to them
so one of these
people has
sworn an oath
right
to basically
take care of people
right
and do what's
in the best interest
for somebody's health
right
but there's
another class of people
that is like
holding out
for their own
like that
or one of the
core research credentials
that don't have that
obligation
about the health
care
I think if we
if we kind of
there's kind of
a framing
that I like
to look at
where you have
the norm line
right
here's the norm line
of everybody
has cell phones
in their pockets
and video cameras
and this is no big deal
but 15 years ago
we didn't
and anything above that
was considered
an enhancing technology
oh my gosh
you have a camera phone
that's insane
that's not evenly distributed
this is horrifying
oh my gosh
our privacy is dead
and then
a few years later
it's not really a big deal
because everybody's got it
right
so anything above that
you know
military technology
is usually enhancing
and then you have
below that
that gets you back
to the current norm
you have this
restorative technology
I
glasses
medical devices
things like that
and so what I'd like
and then you have
this other vector
over here
which is art
and art
you could say
well this is art
so you don't
you can't regulate it
right
so it's about
reframing it
so that they don't
have a legal liability
it's oh well
I'm going to put
an ear on my hand
well okay
I'm allowed to do that
because I'm an artist
right
so I'm also interested
in these like
little tiny legal gaps
that you can exploit
to make your things
art or something
that you can experiment
with and publish
not that it works
in all these
studios
right
so let's see
like whether
that's reasonable
or not
like I think
in some cases
if you write about it
and you kind of do
like the legal thing
as an art as well
there might be gaps
you can get through
but again you could
things could change
and you could get
totally destroyed
right
so this is
an inherent thing
but the question
I have is
do people have a right
to restorative technology
if we think about
vaccinations
and penicillin
and all these things
that are about
a public health
crisis
and suddenly
everybody needs
this thing
because there's
some CRISPR thing
that takes out
something horrible
that could spread
to other people
then wouldn't that
be a reason
to have these things
democratized
so it's 20 bucks
and you go get it
at the CVS pharmacy
as a shot
and everybody has
to have it
versus you pay
$100,000
as a very small
individual
with a trust fund
that can have it
and nobody else
can have it
and I wonder
if we come upon
things that are
good enough
or like
as crucial
to public health
that we
that suddenly
there's an incentive
for everybody
to have it
it still will make
people money
it will still make
insurance companies money
this is being
very utopian
but I'm wondering
if that's a possibility
so like
in terms of
like the people
who don't
follow the rules
necessarily
like
I think they're
absolutely necessary
to the health
of the system
in general
so looking at it
from a broader
systemic perspective
any system
of control
has to have a little
chaos at the edges
because if it doesn't
then there's
there's no resistance
to people
who would game
the system
so you know
like right now
like half the reason
our fucking
financial system
is fucked up
is because
people are gaming
the system
and so
you need people
who can innovate
faster than
they can game
the system
you need people
who can
introduce
unexpected elements
so that the system
can change
any system
that's total order
is is just ripe
for manipulation
and there's
no opportunity
for the system
to adapt
and so
when you have
people who are like
I don't give a fuck
I'm putting this thing
in my arm
then you know
you have
opportunities
for new ideas
to spread
you have opportunities
for the regulatory
bodies to look at
new things happening
and say well fuck
we never expected
anybody to do that
you have opportunities
for the system
to adapt in ways
that make it
resistant
to people
who would capitalize
on the system
from below
and from above
so like
bioterrorists
you know
fucking
like tyrannical
governments
that would use
this shit
on their population
you know
fucking
greedy industrialists
who would use
this stuff
to their advantage
and so when you've
always got
a little bit
of unknown
at the edges
and you've got
people who are
willing to
hack the gaming
that they're doing
then you can
create a
path out
of them
capitalizing
and getting
total control
of the system
I think it was
a comment or question
over here
I was just going
to comment
that when you're
talking about
peer review
and something
similar to an IRB
or board
in terms of
biohacking community
that already exists
because it's part
of the open science
community
there is peer review
people periodically
call the biohacking
boards and say
oh I want to do this
and they immediately
get feedback
from people
who have either
tried it
or have some
sort of specialization
and can give them
feedback
I know that's
not reasonable
and completely
unfiltered too
like hey man
your shit's stupid
yeah well that's
a great
I mean that's
a I mean
we see those
things circle
through and that
that would be
a really
interesting
place
because that
that does
you know
sort of
enforce
and I'm using
the word
enforce
in the lightest
possible way
just a rigor
you know
from that
perspective
without necessarily
imposing
you know
any controls
on the
on the overall
hypotheses
or the folks
that things are
going after
the other thing
I was going to say
about regulation
in general
was just
you know
you sort of
came up with
the example
of the CRISPR
you know
we find some
solution
and it's in the
CVS
the interesting
thing I think
about the disruption
in this space
is just speed
you know
I mean
look at how long
it takes
even something
that's desperately
needed
to get through
a regulatory
process
and get through
trials
I mean
I mean
I just
I just want to
blow that whole
thing up
so I just want to
come back
just to your
comment first
actually I think
to me
I edit journals
we were having
dinner last night
one of our
many conversations
was about how
broken peer review
is
fake journals
and also
conflict of interest
in peer review
so actually
I think
crowdsourced
kind of feedback
in many ways
is stronger
and better
than traditional
peer review
the other thing
I'd like to point out
many people don't know this
but unlike most
other countries
in the world
at the moment
the largest
institutional
review boards
in the US
that actually
have contracts
with most
academic centers
are owned
by private equity
and they're actually
monetizing the data
that comes into
the institutional
review boards
so even
what we think
of as
institutional
review boards
private equity
owned
and very much
for profit
and most people
even in
industry
don't really
understand that
yeah
I was definitely
not advising
for commercial
yeah yeah yeah
but the thing is
the people
don't even realize
in the US
even those
RRBs
which are
traditionally
thought of
as you know
in
independent
independent
the I does not
stand for
independent
exactly on that
line and not
in defense
of the RRB
at all
I share your pain
how though
can we
as a community
enforce the
intent
of an
institutional
review board
of protection
of participants
and
informed consent
yeah
I mean I think
so you're using
the word enforce
it's interesting
to me that
now that
in that
super lightweight
so
so when you're
going to
so citizen
scientists
by hacking
paradigm
I'm just not
sure the
genies out
of both
I'm not sure
how you can
enforce it
like you would
with employees
in a company
or something
yeah
at what point
do you take it
in terms of
making sure
that the
information
is available
right
from a standpoint
of
your friend
wants to know
if this is
going to kill
him
right
really
aim for
is
well
if
obviously
it should
or shouldn't
given we don't
know
that
, but
what else
is under
line
right
here's
all the
info
that's
out there
that you
can take
a look
at
and
kind of
gauge
your own
risks
yeah
that there's
a reason
why
I
what
why
I
like
coming in
with my
optimal
stuff
then just
sharing
hey
here's
some stuff
that you
guys
can look
at
right
I
I don't
pretend to
tell
I'm
telling you
to tell
anybody
how to
go through
the process
but here's
the starting
point
isn't that
kind of
the ethos
we're going
for here
yeah
yeah
exactly
where you
go
try not
to screw
it up
for anybody
else
right
and the
best
and the
best
information
too
right
it's
sometimes
sometimes
I'm not
sort of
arguing
for or
against
you know
a credentialed
person
having
more
knowledge
or more
information
but
sometimes
there is
experience
in the
field
that
helps
you
pull
together
things
that are
across
studies
or across
spaces
to
impact
and I'm
one of
the people
where
you know
when
I'm
my friend
asked me
where to
put their
electrodes
I'm like
I'm giving
you the
papers
and the
whole raft
of stuff
and I'm
telling you
how I
derived
that
thought
process
and you
tell me
if it
works
or it
doesn't
work
for you
right
exactly
right
right
right
but that
seems like
a good
version of
some type
of informed
consent in
a I
mean obviously
there's a
there's also
the relationship
with the
between the
person if
there is a
someone doing
the procedure
and someone
receiving the
procedure that
also you
know I think
is maybe a
little bit
higher level
of informed
consent than
right exactly
I think
part of the
problem that
we're
experiencing
by
is that
it's
indistinguishable
from medicine
medicine is
different than
biohacking
it's a
different
discipline
a discipline
that has
acceptable
risk
yeah
and the
thing is
if we
were to
split
these two
in
academia
in some
way
we would
find
ourselves
able to
do things
at a
speed
which
could then
be
beneficial
to the
medical
community
in a
backwards
way
yeah
absolutely
and guess
what
now we
can help
you in
the medical
industry
when people
have agreed
to accept
the risk
absolutely
but yet
our view
on body
autonomy
when it
comes to
medicine
is just
not there
you don't
own your
medicine
you're not
allowed to
heal yourself
you need to
go to the
guy with
the paper
you can
see it
it's on
the
fridge
it's on
it actually
made me
think of
that
because
my dad
has an
implanted
defibrillator
and I
realized
we don't
have access
to any
of that
data
he doesn't
actually
own that
implant
it's like
a little
resident
in his
body
that's
essentially
owned by
Medtronic
I'm a
neuroscientist
I can
actually
do something
with that
data
if I
had it
I could
do all
kinds of
things
and
right
yeah
yeah
that's
yeah
I keep
thinking
about
I had
an employee
once that
had an
insulin
pump
and he
was really
excited
about it
and then
he got
it done
okay
great
so we had a
one-on-one
meeting
and he
beeped
and I
said
huh
I can
hear the
implant
he said
yeah
it needs
to be
refilled
so it
beeps
can you
change
the
alert
so I
style. And he said, nope. And so this whole thing that he was so excited about, about
restoring to the norm and nobody noticing that he was just a cyborg, it would go off during
weddings and funerals, draw attention to him and make it seem like he was being rude. But
then when he was at a really loud concert, he couldn't hear it. And that was a health risk to
himself. And he couldn't go to the company and say, hey, why don't I have control over even
the alert style? Because it was done. And he didn't even get to see all of the features of
it before it got implanted because he was so excited about it. This was like the state of
the art. And so I actually wrote a book called Calm Technology, which is about allowing
people to change alert styles. And you're going to have a different situation. You're not in
an assisted care home where the person who is taking care of you needs to hear that so they
can refill the insulin pump. You're your own independent individual and you need to change
the alert style. And not even having control over that is so odd because now we'll have a
series of future in which all of us have different cyborg attachments and one is owned by
this company and one is owned by that company and one is owned by that company and one is
owned by this company and they all fight with each other and then you had support between the
two so you could get some nice data out. Oh, but sorry, we closed down the API because it
wasn't making any money. And that was my concern with like, you know, web 2.0 right now is
that there are a lot of companies that, you know, especially in like the qualified self
community, which is, oh, you can have access to your data or you can buy back yourself in a
way, right? We're buying back ourself and subscribing to ourself. And that, you know, if
you were in the Olympics, maybe you could hack these and get some data out. But then that
would render that.
Useless. But you had this kind of small mini utopia of, for a while, being able to access all
the data, remix it, and people could make their own third party systems for analysis of that
data, which was rendering the formerly invisible visible. And that was fantastic. But we
might not see until like the next generation of the web how actually useful for all these
companies it is to allow that data. Because a hardware developer isn't necessarily always the
best at software, as you can see with all these like home devices. It's like, oh, wow, this is a
Philips Hue Lite, but I can't really use the app because it's awful and it doesn't really work.
So allowing third parties, especially also with like government data and things like that, to make
the best interface for their purpose and make money off of that turns it into an ecosystem model
that benefits both people. Because if I bought one of those Nike wristband things as somebody who
advised the Nike accelerator and they've never finished their API and nobody could do anything
with it, it would be really nice. I mean, more people would buy this because it would be more
useful to them. And no company can actually say, oh, I know all the different use cases for this
technology. It's up to the customer to do that. And having this symbiotic relationship between the
two would be useful for both parties. And it's really upsetting to see how terrified people with
legal and these like old school industrial methods that they just say, oh, we need to close all of
this off and we're fearful and then they wonder why nobody is buying their devices anymore. And I
think we have to get over this period of time where we realize there's an incentive for things to
be connected to at least the customer for that to happen. But we probably won't see this in this
generation of the web. We have to have kind of the tide going out and it coming back in. And that's
what really threw me into a depressive loop when all this stuff started shutting down. Because we
go through periods of the web and data that are very open and exploratory and fun and people are
remixing things and wow, these cool things and then, you know. And it just makes me feel awful.
It's like, well, now it's all beige and corporate again and we lose all the
opportunity and the art. And you brought up Steve Kurtz which is a really interesting case. I
might not get the case right but there's this guy Steve Kurtz and he was doing a bunch of art and he
had this guy named Professor Farrell who was getting some non-interactive biomaterial for use in
these art exhibits. And he was very open about the fact that he was experimenting. And then his
wife got sick or died or something. He called 911 and they said, oh, well, it must have been the
biomaterial in your house. And so they made this big case out of it. And they said, you might have
killed your wife or something like that. And they went through his house with hazmat suits and
tried to figure it out and they tried to indict the professor for giving him this non-interactive
biomaterial. And I was like, well, none of this was an issue. But it was this big landmark
case that this person doing art. And so when we talk about, is it okay for me? Is it going to
harm me? That's one level. But the next level is, is it going to harm somebody in my
household? And if you make a system and sell it to somebody else that interacts with
some cancer that they have in their system and triggers it, and there's a correlation tied by
some police officer, like regulatory institution that has nothing to do with what you did, then are
you on the line for all these other people? And so that was a scary case that came out where
they tried to get him in trouble for something that he actually didn't do, but out of this, out
of this fear-based thing. So we have to wrap up, unfortunately. But I'm really glad that we
were easily able to solve this simple problem in our one hour panel.
So what I would say is I would propose to Nina that we continue actually talking about ethics
probably every year, because this is an evolving area. And obviously, we feel very passionate about
it. And the level of engagement we've got from the audience, thank you for doing the job for us.
Really appreciate that. And we'll definitely, if you like it, we'll continue. Really, I think this
is an area we need to think about every year and try and maybe show some leadership even to more
traditional groups. So thank you, everyone. I appreciate it.
.