Thank you for inviting me, Trudy. Can you hear me okay?
One correction: I'm one of two Indian geneticists. The other
is Cliff Goodreau [sp?] at NIH, that you know. He's my younger brother,
so I treat him that way. We often remark that when we ride in an
elevator, we hope nothing happens, because there goes the nation's Indian
geneticists. [laughter] So when he was out in Santa Cruz we
used to have our annual meetings at a telephone booth in LA, so that's
kind of how we operate. We keep very close though.
Thanks Eric for your comments, I read your paper, and [it's] interesting
how you articulate things. I have some comments about that, but I'd
really like to go back to the issues. Let's go through those again,
because these are very important, because these are complex and, from the
Indian point of view, there are other things that we look at that I think
would be important for you to hear and for me to share. "Who should
identify human groups for genetic study?" Well, the alternative to
that is from the Indian, "should there be genetic study?" I mean,
this is something you guys talk about -- I'll just say, from my perspective,
there's Indians and whites, okay, and that's the way I refer... nothing
derogatory, I'll use the "W word," because I know you're going to use the
"I word" [laughter], so let's just lay that right out there. So from
the Indian point of view, the whites make the decisions. Who should
identify human groups for genetic study? Indians are saying, well,
why study it at all? For what reason, for what purpose? We
have our own origin myths; we have our own concerns. Is this research
valid? Are there promises made that maybe won't be kept? What
is your rationale for doing this study anyway? Well, promises: medicinal
promises, other kinds of promises. "We're going to tell you who you
really are, where you really came from. We're going to tell you,
we're going to," I heard one person say, "We're going to clone you
and raise that clone and tell you who really are," as if we really needed
to hear that stuff. So there's a value and a perspective that's different
from the onset, about research priorities: with whom and by whom?
Promises made. Now you look at that 35-year study of diabetes down
there in Pima. I talked with principals of that project, and I said,
after 35 years, what have you got to tell us about the genetics of diabetes?
"Well, we think about clusters here and there and chromosome so-and-so."
Have you really elucidated a genetic mechanism? "Not so far, it's
still kind of fuzzy. There may be genetic underlying mechanisms,
but precise mechanisms, no we don't know that." Well, after 35 years
of studying I don't know how many millions, if not billions, in that study,
a lot of professional training, a lot of papers, a lot of professional
preparedness, and climbing that ladder, post-docs, everybody else in there,
what have you got to say after 35 years of study? And I was told,
"Frank, two things: watch your diet and get plenty of exercise."
[laughter] And I said, did I hear you correctly? After 35 years,
and probably millions, if not billions [of dollars], thousands of papers,
mainly white researchers, generating the professionalism, increasing it,
this is all you can tell us? I talked to Indian people about it,
particularly Pimas, and they're saying, well, could that money have been
spent in other ways to do other kinds of research, say like, community
education projects, maybe helping us get money to get back to our own native
foods, to treat this in our own way, because we don't need some anthropologist
coming in to tell us how to do this, because we have that knowledge already.
Just give us some money, and we can do it.
So that's an important question from the onset. Who sets the priorities?
Who determines what direction? See, it's all one-sided, see we've
been serving as research subjects for the past what, 500 years -- ever
since Christopher Columbus wrote that letter in 1493, and they've kept
on coming -- serving as research subjects. So a lot of, that question's
being raised. What is the relevance of this research? Empty
promises? We don't know. When you talk about diversity in the
Indian community, then that raises the hair on a lot of people's backs,
so the other entree is, let's look at the medicinal, the medical benefits
of this research, and that's where tribes might buy into it.
So who should identify human groups for genetic study? Scientists?
I think it's, if you look back on it, they think about this, they talk
in their circles, they know who they want, they have their list out.
The Human Genome Diversity Project has their list. NIH and their
Human Project, Human Genome Project, has their list. So... and I
think within each professional circle -- you talk to anthropologists, they
know the tribe they want, and I suspect Hopi is in many of these lists,
my own tribe. So we just can't make the assumption that these people
haven't thought about these issues before, and targeted certain groups
that they want to study. Group representatives? I don't know
what that means. Maybe they want to study their own selves.
I know, I went to this conference in Maryland, [where] blacks made a real
good presentation for being included in these diversity and other studies,
and Fatima Jackson wrote about that, and I wrote a response to her paper,
about why blacks want to get involved and why Indians don't, and that's
included in your packet. So blacks have a different history, as I
discussed, they have different viewpoints, they have a lot of things that
are different, and that's what makes Indians in all this, because of our
unique history with this country that other minorities don't have.
And we have special concerns: we've been fighting this battle for
a long time. We live with stereotypes, we live with name-calling,
we've been called this and that, and it still goes on. So there's
that added specter of maybe whether or not these stereotypes and misconceptions
might be continued with this kind of research. But group representatives,
that's an interesting point, because the blacks, I gathered from that meeting
-- which will be published soon -- look like they really want to get involved,
mainly for the financial aspect, and they don't want to be left out.
From that meeting, I tried to discern where the Asians and Hispanics stood,
and came away thinking they're too disorganized to really come to any conclusions
about any of this research to really name a representative group.
Asians the same way, so we just don't know. But I think it's important
that -- and I mentioned this to the group, and I think I mentioned it the
paper -- that we should have something in writing from the respective groups,
if there are ones, and see exactly where they stand on the issues.
So when you get within the Indian community, it's diverse, very diverse,
because of the number of different tribes. And even though we speak
a lot of different languages and do a lot of different things, we do come
back to some basic values and a common viewpoint that we all share.
And there are some things we definitely have some views on, that I've also
discussed in those articles, that make it very interesting from the Indian
viewpoint of where we proceed on this. And it's very interesting
when you go out and you talk to Indians within the United States, and even
in Canada, when you talk about certain things, where we just have a right-on,
I guess that's the values we share. I can even talk to Navajos, which
I haven't done in years! [laughter]
But what about governments? I don't know what you mean by governments,
so that was interesting. U.S. governments? Foreign governments?
Tribal governments? So this... Indian government? I don't know.
So... Who should identify groups for human study? Well, I think the
other question is, we should ask them if they want to be studied, and if
they do, proceed from there, and Morris Foster, sitting out there, in his
paper talked about his particular approach to doing his work. What
was it -- 35 years ago, almost -- when I did my own work amongst Hopis,
I had a particular protocol that I did. And I'm asked questions about,
what procedure did you use as an entree in your own community, and I, we're
looking at that, and going back to our old notes, and seeing just how I
proceeded, because after all these 35 years, I haven't got any real negative
response from my community. One for one, I still have the data, all
the pedigrees, including eight generations, that I won't share, and will
never share; that's my pact with my people. I'll never publish that.
I don't know what I'm going to do with that. That's my big concern,
because I've got those pedigrees sitting there, that are probably valuable
too. I have many anthropologists and medical geneticists that want
those pedigrees. And I say, absolutely not, you'll never get them,
because that was a pact I made with my people. So when I go, I don't
know, maybe I'll burn them up, throw them away as a pact to my people and
say, that study was done. It's like a cell line: you create a cell
line, and when that project is over, you get rid of it. So I don't
know what I'm going to do with those pedigrees, but I guess they're going
to be valuable. Some people are even suggesting putting these on
walls at the museum of [Second Mesa]. I don't know! But potentially,
that's useful information that I've kept all these years, and I haven't
divulged or revealed that to anyone, so that... I go through these
kinds of things, so I share that with you as a perspective, an experience
that I share in my own research. These are highly potential explosive
things, but through that I've kept my own pact with my people, and I think
that's important, because they can trust me now. And I think that's
a key word in all this, is the trust. And I'll never reveal that,
and people come out and say, well, we want to do some pedigrees, I say,
go right ahead and do your own, and we can verify them, and you start from
scratch, and that's OK I feel comfortable with that. I was going
along in research, because I've been studying the albinism for what, 35
years, when I was about at a point where -- we were doing the animal model
study, somatic hybridization study, you had to get through to get two of
them. And I was at a point where I was going to perhaps do fieldwork
and collect the blood samples to analyze and perhaps map the albino gene.
But that was in early 1991, all this stuff about the Diversity Project,
and potentially the Human Genome Project, came out. And I knew, just
then, when I heard about that Human Genome Diversity Project, that I had
to make a decision. And so that was the decision I made, was to put
a moratorium on my own research, because my people were calling me and
wanting to know, they wanted me to help them, so I had to put that aside
for a while, which is still there. Because I couldn't do that kind
of research. I know that from my own experience in the Indian community,
do something and have them, because it happened, they came out and tooth
and nailed them: "What are you doing this kind of research? You talk
about one thing, but look at you, you're doing this kind of stuff."
Well, I put an end to that, because I wanted to be politically or scientifically
clean, at least in this incidence, when I work with my people, so they
can't throw it back on me. It's a decision that I had to make, but
I'm comfortable with it, because I can help them without tossing and turning
at night, because I lose sleep over this.
So those are things to consider. I don't know if anybody has had
that similar experience, but I'm sharing these from my perspective as a
researcher with my own people, just how difficult it is, the sacrifices
you have to make. And so -- oh, I'm, the science side of me, there's
that dominant gene or semi-dominant gene that says: Look at stuff!
There's that Hopi gene over here that says: Be careful! So that's
where I stand. And then, as I looked at the Human Genome Project,
the NIH initiatives -- I predicted this with my people ten years ago.
I said, it's not going to stop with sequencing or mapping or even function
and genomics. This baby's going to go on, because they have the technology,
they have the money, they have the resources to do it. And I kept
telling the Indian community, it's not a matter of if they're going to
do it, it's when they're going to do it. So we're nine years ahead
in our thinking of this, and I was trying to prepare the Indian people
as I talked to them, and they listened. And sure enough, 97% of them
saw that paper by Collins, et al. Yeah, there it was, there it is!
They're not going to stop at sequencing or even function and genomics;
they're going to go on. Six kids, you said? Yeah. So
I was at the early meeting -- when was that? Who was at that early
meeting? Anyone here? When was that? May of last year?
Last year? Because I was invited to participate in the five-year
planning committee for the Human Genome Project, and I was assigned to
the Smith subcommittee. And as I sat in those meetings, I had the
impression this was, all been decided, this has all been worked out, and
they were just discussing the details of that. And I asked that one
question, do you propose to have Indian samples in your program?
One question I have for you is did you ever bother to ask Indian people
whether or not they wanted to get involved in this research? And
[as I found] the answer is no, we did not. Did you even think about
getting involved, because of the sensitivities, as a courteous gesture
of respect? No. And I left it there. And at that time,
I don't think we had any Indian samples, but I suspect now that we do have
some Indian samples in that project, and I'd be very curious to learn what
protocol they used to sell that idea to the Indian tribe.
Item two: Should researchers try to avoid using socially defined group
boundaries in designing genetic studies? Well, for Indian people,
this might be another category we could add here. Socially... you
talk about genetically defined demes, and there are questions with that,
and how they overlap the social units, but then you add in the Indian component,
and you're talking about political entities as well. So political
entities ought to be defined, which may help in categorizing Indian groups.
I know that Hopis have a mixture of a lot of things, but politically, you're
a Hopi. Culturally, you're a Hopi, and in our ceremonies, we do Hopi
things, so that we might in a different way. You have socially defined,
but you don't have culturally defined, or religiously defined, or spiritually
defined, which would relate to Indian people. Because with Hopi,
we're all mixed up in our different clans, but when we do our ceremonies,
we all come together, and what unites us is not the socially defined group,
but the religiously defined group, our spiritual part, that brings us all
together. And that's something we share. And then you go to
other tribes like the Pueblos, go to Zuni, you go up there to their ceremonies,
I'm invited in, not to participate, but as a member there, so there's free
access I have throughout the Pueblos, and they know me, and I can go to
their [ceremony], their fasting when they do that right after that, and
so on. Those kind of things unite you, even though biologically you
may be different and have a different sequence of variation. There's
something else we have to deal with in the Indian community, and that is,
to kind of put a tag on it, it is that cultural component, the religious,
the ceremonies, that define us, that we know about. So these are
other dimensions that we might add to group Two. And I think that's
an important one when you look at Indian communities.
Now what about nested human groups in which researching the part may
have implications for the whole? This is a very complex one, so potentially
very explosive, because if you do research on one part of the city and
population, that may have repercussions throughout the Indian community.
And there's nothing that travels faster, greater than the speed of light,
than news in the Indian community! I guarantee you, we can get that
news around, especially now with the advent of e-mail, it can get around
faster, and I appreciate that. But it's one that particularly affects
the Indian people, and not only here in the United States, but people in
Canada are wondering about this too. If you do research on a subgroup,
what effect does that have on the larger group? And it's, you're
going to come down to other topics that might be covered.
... about research in socially identifiable populations. And I
was reading through that, and I was saying, well, you know, this, comparing
it to my own experience when I was doing my research among the Hopi, and
looked at it and, talking about maybe anonymity. Then I turned to
page 697 in this one paper, "A Model Agreement for Genetic Research in
Socially Identified Populations," and right there at the bottom of Communal
Discourse, it names Apache, the Apache tribe of Oklahoma. It just
blew me away, I couldn't believe that a tribe would be named when they're
talking about these kinds of things about research and naming names.
So I wonder about that, and right away, in the Indian community, it's going
to be drawing attention to the Apache tribe of Oklahoma. So any research
coming out of that, having to deal with Oklahoma and Apache tribes, I mean
Oklahoman tribes, then it's right there and published already that there's
going to be a red flag drawn toward the Oklahoma Apaches. And I don't
know what effect that's going to have on that community, because it's something
we haven't dealt with before, but any Indian person who's knowledgeable
about Indians will recognize this.
And then there's another one that I saw that's in your paper: "The Relationship
of Binge Drinking to Alcohol Dependence, Other Psychiatric Disorders and
Behavioral Problems in an American Indian Tribe." And they go down
here trying to conceal the identity of that tribe, but if you look on the
next page, 519, "Methods:" study population, and I'll skip down to about
the middle of that first paragraph. "The tribal community consists
of three reservation sites as referred to as 'The Southwestern Tribe.'
The majority of participants reside on the largest Southwestern tribal
reservation." I said, that's not Hopi, that's not Pima, that's not
those Havasupais or those Lalapais [sp?] over in Grand Canyon, that's not
Zuni, that's not Fort Yuma, or the Kikapoos or the Mojaves. "Largest
Southwestern tribal reservation." And I said, Oh! I think I
know which tribe that is. It starts with a T. Anybody recognize
it? What reservation in the Southwest starts with a T? [pause]
The largest? [pause] Come on, anthros, you should come up with
it just like that! [another participant: "They want to tell you,
but they don't want to breach confidentiality!] Oh, I see!
[laughter] You ever heard of Tesabo [sp?]? What's Tesabo?
Anthros, come on, what's Tesabo? I should take you back to Anthro
101 or something! What is Tesabo? I'm not picking on anthros,
I'm just trying to bring home a point here.
Q: It starts with a D?
Dukepoo: No, it starts with T in my own language, in their own language,
yes. Tesabo in Hopi means "head pounder." Who are the head
pounders? Tesabos? The largest ... [audience comment: “You
are giving them your name.”] I can do whatever I want! [laughter]
They're Tesabos to me, head pounders, just making a living, I guess, in
those days, pounding Hopi heads. But that's an added dimension, see?
We're a tribal entity, because we fight. We refer to them as Tesabos,
not Hopis. Tesabo, Tesabo. But that's an added dimension we
want to throw in here, because there are things within the Indian populations
that are not even considered in these discussions. Now, it doesn't
take you hard to figure out if that's a Southwestern, and we refer to the
largest Southwestern tribal reservation, that's what? That's Navajo.
I'm sorry, but it's been published and I had to look at this. The
question I'm raising is, we talk about anonymity, and there are other dimensions,
because we have Indians who know about Indians, have a network that we
work through, we can figure these things out. So it's going to be
very difficult, is the issue I'm raising. Try to conceal this as
you might, but if you figured them out -- I don't know about this one,
because if that's true, then there's only one Southwestern tribe that I
know with the largest reservation, probably not only Southwest but probably
in all of America, North America, United States. This just says Southwest.
I don't mean to pick on you, but I want to make a point, I want to make
a hard point here.
Now, if we know it's Navajo, then that word will spread. Maybe
not by me, but other people will figure it out if we read these papers.
I'm not the only one that's figuring. There are other people out
there reading this stuff. And I know the Southwest, and other papers
may come out naming Northwest. Well, I'm not familiar with Northwest,
but you might ask people if they know Northwest or Pacific Coast Indians,
or Wisconsin Indians, or whatever Indian group they might have. You're
going to have experts within that who can figure these things out.
You don't need to be an expert, just be an Indian in that community, and
know your community. [side comment on time] I'm sorry, okay.
Well, thanks for letting me share with you those things, just based on
what I've been reading here, and I hope I've raised some issues that you
may not have thought about, and I hope we can continue this discussion
about some specific Indian concerns we have about all this research.