all right all right hi everyone
i'm alex pearlman i am a bioethicist and
an independent journalist and researcher
and i'm so excited to be here today with
my colleague christy guarini
um at the biohacking village at defcon
so thanks so much for having us
um christy why don't you introduce
yourself sure
hi everyone i'm christy um i'm an
assistant professor
in the center for medical ethics and
health policy at baylor college of
medicine and really
happy to be here excited to share the
results of the project that i've been
working on with alex
yeah we are so pumped to talk about this
paper and what we really were looking
for
um was to ask whether oversight
of ethics was something that community
scientists
biohackers are interested in and if it
turns out that that's the case
um what forms any kind of oversight
might take um and so given that you know
in these communities there are a lot of
different opinions a lot of different
um backgrounds and ways that folks
self-identify we were really interested
to see
sort of what the attitudes were towards
these questions
um and then we're really excited
specifically
to be able to come and then talk about
our findings um with this paper
especially because
we are really adamant in the research
that we do
that it's for the communities that we're
listening to and that's really what
we're doing we're just interested in
what the attitudes are and then
reporting that data back to the
community
um so i just wanted to kick off from the
beginning christy can you tell us a
little
bit about how this project came about
yeah sure uh so i
i'm currently a grant funded researcher
and my research does focus on this
intersection of
law policy ethics and health
i i'm really interested in innovation in
a past life i was a patent attorney
and so when i came to baylor i did
become aware of independent research
communities
uh and the the work that's being done in
these spaces became very interested
uh in that work and so i started
investigating questions around ownership
uh during the conversations i was having
about ownership questions
the the broader more general questions
around
ethics and the role of ethics oversight
in the communities kept coming up
uh so i went back to to get a little bit
more grant funding to
to drill down into those issues in
particular
and it seemed like the appropriate way
to do so was through an interview study
by
uh listening to you and getting the
perspectives of
the individuals doing the work whose
work
would be subjected to ethics oversight
yeah and i was so pleased and honored to
be asked to join your research team
as someone who had been reporting on and
writing about
these communities for so long um
and so one of the things we heard in our
interviews which
definitely um was something that i had
encountered before was a lot of
different terms for self-identification
so we ultimately go with this umbrella
term in the paper that's biomedical
citizen scientists but we also heard
folks self-identify as biohackers
diy biologists citizen scientists
community scientists
um independent scientists and so um
you know we definitely had a diverse
cross-section a lot of these different
sort of subgroups
of independent research communities but
we also
did a really deep dive into sort of who
exactly
were we interviewing and and who were
our
um study participants so we have a slide
sure and i'm going to share my screen
yeah so uh alex thanks for
i mean that i think that captures well
that we were trying to
elicit sort of uh broad perspectives uh
that were um sort of representative
of various communities multiple uh
communities and
activities we ended up we did these
interviews
at two different conferences uh the
first was biohack the planet and the
second was the global community bio
summit
we spoke to 35 individuals and
the this table which i've broken down on
the right is reported
in our larger paper reporting our
findings which is
publish open access in citizen science
theory and practice
so who are our interviewees well 60
did identify as male the majority were
between
ages 30 and 50. they
came from six different countries but
the majority were based in the united
states
uh and specifically in the united states
uh in the northeast
as well as the west coast really
california
and then finally our interviewees were
produ pretty evenly split
uh between the two conferences uh that
they attended
yeah and we also you know were
were really interested um in
not only the practice of interviewing
that's one of my favorite things to do
um but then also you know we get all of
this interview data from
these amazing folks who take the time to
sit down with us
um and then what do we do with it right
so we had this
really um wonderful
um qualitative research methodology
that i thought was super interesting and
very different from
how journalists generally do research
even though a lot of times we get to the
same
place so you know without an entire
research team which is about
five or so people at the beginning of
the pandemic we
went through a series of steps to sort
of
get to the heart of the data and the
interviews so
what is it that we did christy what was
our
qualitative research methods yeah sure
happy to to summarize those steps um and
some of you listening in may be familiar
with these steps but we really
followed a pretty standard approach um
so first we did have the
audio recordings professionally
transcribed we then cleaned the
transcripts
and by that i mean that we took the
transcripts back to the audio to make
sure
that all of the words on the page were
faithful to the audio recording
um because every every word is a data
point right at that point we then
turn to what's called coding which is
the activity that links
data collection to data interpretation
uh so with coding we take the
transcripts
and we apply we identify and apply
codes to different chunks
of the transcripts the codes are really
a way to identify patterns
across the conversations uh because
oftentimes interviewees will uh
talk for a long time i mean the
conversation can veer away
from the question where it began right
so we need a way to sort of understand
and organize
uh those conversations uh so in a very
long and iterative process we don't
develop a code book
as a team we come together we identify
codes we develop a preliminary code book
we take it back to the transcripts we
see if it works it usually doesn't it
didn't in this case
we went back to the code book we
adjusted it etc until we had a final
stable code book at that point
we all went back to the transcripts and
we coded all of the transcripts
according to that final code book
we then generated coding reports and
then sat down with the coding reports
in order to do the interpretation
work and identify themes
that we knew we wanted to report in our
final publication
yep and i'm gonna talk a little bit
about
what those themes actually were um
and here i will share my screen um
we did uh we did find ten
sort of high-level ethical priorities um
that folks noted as things that were
important to them that they were
thinking about
and that they felt you know was really a
part of conversations that were
happening in the community
and so those ten that we sort of
picked out of our of our data as the
priorities
of folks in these communities were
autonomy respect
diversity safety community consent
equality education altruism and good
science
and it seems you know kind of silly to
say because these are all
pretty high level ethics concepts
and principles that are necessary for
good science
um but they don't actually map
exactly onto the traditional sort of
establishment
ethical principles that um you know more
traditional and establishment uh ethical
oversight
um models sort of used as guiding
principles and so
that was a little bit interesting but
also
it's really important to note that these
conversations are already happening
when we went to talk to folks about
what their attitudes were about ethics
it wasn't the first time that
these conversations had come up and that
it was it was very clear
that a lot of thought is going on in the
community and a lot of conversations
center around these concepts of
ethical oversight and how do we do good
science well um and do it right so
that's one of the things that we um
definitely saw
um and i also wanted to talk a little
bit about
um you know the fact that there's
already this culture of ethics
that exists in in these in these spaces
um but there's not exactly a
sort of centralized way that folks are
using
to actually put their principles
into practice right um and so
one of the things that we talk about in
our paper are a few different
models for ethical oversight that exist
and that we have sort of
seen examples of or know um
that folks might be interested in
and i'm happy to share the conversations
around those oversight models i'm gonna
share my screen and i am watching the
clocks i'll i'll try and do this in just
a couple of minutes
um so as as probably everybody here
knows the traditional
uh mechanism for ethics oversight in the
united states is called the
institutional review board
it is required for all uh federally
funded research as well as fda
regulated activities uh
so what we were interested in is what
our
interviewees perspectives are on the
feasibility and appropriateness of that
model
as well as some alternatives to it
given that irbs may not be accessible
to independent research communities
either because they're not affiliated
with institutions or they can't afford
the fees that are charged by independent
irbs
uh so so we set them out here this is we
call this our stair step figure
where we've organized these models from
uh sort of formal processes to informal
processes
uh uh an external review meaning
external to
uh the communities
to very internal mechanisms
and with the caveat that we were not
able to discuss
every mechanism with every interviewee
due to time constraints
but if we start over on the left we did
discuss
traditional irb review as well as
some sort of experimentation that's
that's taking place
with irb review in some communities so
some communities are
registering their own irbs we discussed
expert consultation models this is where
outside experts
by that i mean professional ethicists
biosafety experts other scientific
experts
might make themselves available to
communities to provide opinions and
answer questions
then there's a community review model
which is a really a community built
oversight committee that usually
the idea is that they usually provide
guidance
to specific projects then there's this
idea of crowdsource review which is a
really interesting model that's been
proposed in the literature and the idea
is that
an individual or individuals designated
as citizen ethicists would provide their
opinions
on those projects there's
the idea of systematized self-reflection
this is a model that was used quite
successfully by a group of quantified
sulfurs
and the idea is that project
participants get together periodically
and they reflect
on the ethical issues that they're
confronting in their work
and then finally all the way to the
right are codes of ethics which of
course have been adopted
in community bio and diy uh
bio communities so we
again we sought to understand you know
perspectives around feasibility
and appropriateness uh with these models
yeah and i think you know there was a
wide range of opinions
about and like attitudes about each one
of these and like you said we didn't get
a chance to bring up each one to every
person
but we did ask a lot of people about a
lot of different kinds of oversight
models
um and so there's definitely you know
the biggest split that i saw
was um the difference in
opinion about bringing on experts and
even consulting with outside experts
like
you know folks who are legal experts are
regulated knowledgeable about regulatory
schemes
or bioethics or biosafety experts who
are part of sort of establishment
systems
um there was a large group of folks that
we interviewed who are more hesitant
about that
but then there are also those who are
really really open to that idea
um and are willing that are willing to
engage
in building bridges building
relationships and having these sort of
open conversations
with folks in establishment spaces that
i really am excited about
so um i am too a big takeaway for me is
it needs to be the right partner
it needs to be a partner who is willing
to invest time
into understanding the activities and
the priorities of the community
that is asking them for help i thought
it was very encouraging though as well
yeah um so what what are some of the
barriers to getting to these models that
you see
yeah so um what we heard is
i mean as you said i mean lots of
interest in uh
trying out these different kinds of
models uh but significant barriers in
doing so
and honestly it seems to come down to
time and money
uh especially if you look at sort of
community review models
um that that really will take an
investment
uh to to establish
uh as well as to sustain
so i think to me that's that's the next
big question
is how we can support communities um in
it you know
piloting these models um uh
and helping them overcome those barriers
what are your thoughts though well
absolutely i mean i think that you know
our role is just to sort of listen and
sort of help if if we're asked
but that ultimately you know one of the
other things that we heard
sort of across the board really was that
any kind of ethics
oversight model needs to be culture
built
from inside the community and it needs
to be driven by members of these
communities
and not from people who are outside um
and so that's that's basically what we
were you know trying to do with this
paper was just sort of listen
and just sort of keep pushing this
conversation along
you know that that had already been
happening and will continue to happen
and
um you know we're just really excited to
to
you know help continue to help and be
there for
for any advice or insight or whatever or
more just more conversations
at conferences because that's fun too
so yeah i think we're probably at the
end of
time but um we also wanted to note that
we we built a website called
outlawbio.org
and all of our research and a lot of
christie's
research and other members of our
research team that is related
um can all be found on that website and
so we're really excited to sort of share
all of this with the community and and
build it out
yeah so thank you for the opportunity to
to share their project uh it's great
talking with you
to see you too christy and thanks
everyone at defcon for
listening and thank you especially to
nina and the other biohacker village
organizers for having us and um yeah
hopefully
we will see you next year in person one
can only hope
thank you so much everyone