So here is my question.
So we've been talking, certainly from
your perspective from pharmacogenomics
and genomics, more generally, and we've been talking about
that all day.
But I'm wondering if you mean, it seems to me that all of the
principles
and approaches and,
that would apply to any researcher
who is planning to engage an indigenous community
in a research effort.
Yes, that's right.
And I think it's not only just indigenous
communities.
I think other other communities.
And we can use these same principles.
So other communities that might be underserved or I
mean,
I think I, I really like the way
you talked about the importance of
not thinking about these as separate realms.
And you know that there's science
on the one hand.
And then there are cultural, cultural traditions on the
other.
And that seems like a universal lesson
that there are, all sorts of ways
that if you go in
with one perspective and sort of dismiss the other,
it wouldn't be surprising if
you wouldn't be welcome into that community.
So in thinking more about the
the work that you're doing, are there particular
topics that you find are,
you know, more controversial
than others when engaging indigenous
communities, or is it a matter of sort of
meeting them
where they are and, you know, engaging them
from that point?
Yeah.
I think that's initially one of the questions
that I always get. And,
from folks is about,
tribal membership and tribal enrollment
and how genetics could play a role.
But I think it's,
I don't think that genetics can help with that
because a lot of tribal enrollment,
rules are tribes specific, too.
So it it always involves a
conversation of,
what can genetics actually do?
We can't distinguish we can't distinguish
between people at a tribal level.
And would we even want to. So,
I think the other one of the ways is,
genetics can be used in tribal enrollment
as, like a paternity test.
That's the only
test.
Genetic test I've seen is enrollment.
But usually that's a, sort of a controversial or,
could be a contentious topic that,
I don't do any research in that area, so,
I try to avoid that.
Yeah. If possible.
The other thing,
and I think the other topics are really driven
by the tribal communities themselves,
and sometimes it's
also that I have to take a step back and,
say that, well,
this technically isn't a genetics.
Genetics research probably won't help
this as much as,
prevention research or having adequate health care.
So, that's one of the things I think of when, like a lot of
people,
like, are interested in type two diabetes
because it affects so many of their community
members.
But I don't know if a genetic approach
would be appropriate.
Like using a lot of funds to study type
two diabetes and genetics
and the genetics aspect, when I can see that there are
people are living in health or food deserts, they don't have
adequate,
access to healthy foods.
They don't have, a lot of these other resources that are not
genetics,
but other prevention mechanisms that are more appropriate for.
And when you're thinking about this topic.
So I think I'm, I'm always trying
to see how genetics really,
play a role.
And just thinking about what would be best from my
perspective.
And so that's also why.
And when I do these studies, I try to at
least have other types of measurements,
that can be useful in the future too,
if we do do some type of genetic study.
Great. Yeah.
Just another reminder about context, right.
In terms of.
You know, the like the limitations
of the genetic information.
We have a question here.
Brittany Scott one. Hi.
I was wondering if you can say more about,
the discussions within the Navajo Nation
about the ban on genetics research
and if it's just kind of the risks
seem to be more
than the benefits for people within the nation.
And also that extends to clinical
genetics or just research.
Yeah, that's a great question.
So the moratorium
only extends to individuals.
The jurisdiction of the Navajo Nation.
So technically, if we were off the Navajo
Nation,
we could participate in a study.
And it's only, on research, clinical,
use of genetics for clinical testing,
can be done.
It's often not done on the Navajo Nation.
Anyways, but they usually have to refer
people
outside of the reservation for, clinical genetic testing.
So if it's being used for clinical care,
I think that's completely allowable.
So back when the moratorium was put in
place,
there's a really great video
that came out around the time, called The Gift of
Life.
It's I don't know if it's available online, but
it's there
for video that contextualizes all of the concerns at the time.
I think also those perceptions have
changed.
So we published a paper in 2019 where we did a survey
in the Navajo community we surveyed over 700 Navajo
people,
and we asked them questions like,
what did you know?
The moratorium was, existed.
And and then one of the last questions
was, do you think that
we should lift or remove the moratorium?
And also we asked them about different
concerns that they had in the community.
So, one of the most resounding results
was that over about 75% of people
did not know that the moratorium was in place
back in 20 2018, 2019,
when we conducted the survey, but about,
and about 50 to 60%, we're not sure what to do.
They weren't they felt like they weren't
informed enough to know whether
they should support lifting the moratorium or or
not.
And one of the big things that came out of
that was that
people said, we want more information on
genetics
and how it could affect the Navajo community.
We want if this was to genetic research was to go forward,
we want it to prioritize some of the
health issues in our community.
And then, we want to be involved.
And so that that survey led to my colleagues
and I creating another or submitting
another grant.
It's a large pilot grants.
And as a part of that grant, we proposed to develop
all of these genetic literacy projects
for the Navajo Nation.
So, we're excited that next year,
we as a part of that,
we're also we, proposed to, to host a big conference.
So next year we will be hosting the Navajo
Genetics
Conference in May of 2025, where we will,
share
all of the educational products that we've created.
One is a Navajo genetics glossary of over 250
genetics terms translated into the Navajo
language.
And that'll be a booklet we publish.
Another is five, digital stories
that we will share, hopefully before then.
And then we're also creating, cultural framework
for thinking about genetic research
with, the Navajo community.
So we're really excited about this conference next year.
If you're if anyone's interested,
please let me know.
We should have,
website up, in a couple of months
or this year.
Great.
Well, thank you for that question.
Yeah. Thank you again.