Questions and Answers
Greely: I think we now have a question period, which I'm told is 15
minutes, and since I don't have a watch, I'll rely on Trudy to make sure
Q: [inaudible]... several years ago, Psychology Today featured
an article about this young woman and her parents -- is she African-American
or is she not? She identifies herself as African-American; one her
parents [inaudible], one of her parents identifies himself as African-American,
[inaudible]. And particularly striking are these photographs of twins,
one of whom looks "black" and the other one "white." I'll pass this
around. Who's African-American? I think that these striking
pictures really emphasize that the African-American community is socially
constructed, and especially in the United States. And if you're talking
about genetics, my God. Are these twins going to be in two different
populations genetically? I don't actually know the genetics of melanin
in the skin; it's just that it's extremely striking. The other question
I had, or a comment on the articles, the paper is, for community consensus
to not be a problem with the community, those who disagree must have the
option of leaving the community. This happened with the Hopi [inaudible];
this has happened recently with [inaudible], when [Tom Porter?] led a group
of families who would not live on a reservation that was favoring gambling,
and who led the families to make their home in another settlement.
It, community consensus must include the possibility of those who disagree
leaving, and in many communities, not just in reservations, the option
is really not very feasible. And I think that ought to be brought
Q: I think that both of you alluded to difficulties of [inaudible].
I'm going to make it sound hard, and I particularly want to challenge your
[comment?] that individual consent is secondary to [inaudible -- group
consent?]. I think that [inaudible rest of comment]
Foster: Well, I guess I would reply that that is still, your
view is still based in Western Eurocentric perspectives. And I'm
certainly not saying that we should completely follow the local pattern,
but we need to recognize it, and that this is a -- I don't have a solution
to this. But I think that part of the problem in thinking about it
is [inaudible] by our unquestioningly extending this sort of bioethical
notion of extreme individualism, which really, in some ways, is culturally
specific to bioethicists. [laughter] And lawyers! [laughter]
And I think we need to question it, to think about its basis in collective
Q: Right. And the other thing [inaudible]. But [inaudible]
Foster: No, that's why you became a bioethicist! [laughter]
Q: Right, and a lawyer. But, I mean, we all accept it on the face,
we [have to question?] [inaudible rest of comment]
Foster: Yeah, I agree that there are certainly problems.
Greely: I actually think that's one of the deepest issues in not only
bioethics, but all rights questions. Are there universal human rights,
or are they culturally derived and limited to the cultures in which they
sit? And I get unhappy either way that question gets answered.
From a lawyer's perspective, there are some things that, as a matter of
international law, one can say are, as a matter of international law, universal
human rights; but what international law actually entails is generally
not very effective.
Q: [Inaudible], and I mentioned this yesterday in the small group discussion.
As far as Native American communities are concerned, [inaudible].
Morris, you talked about the importance of the community [inaudible] in
finding and understanding [inaudible]. And I've heard from a young
woman from [inaudible] who's actually doing some research on [community
understanding?]. And she says that [inaudible long phrase].
You know, these are questions that I think, I think underscore the idea
[inaudible] promise of genetic research [inaudible]. You know, these
are kind of enticements, I would even call them coercions on the community
that allows them to [inaudible]. So you know, the idea of really,
truly, informed consent is really [inaudible]. And it's just really
important to understand what [inaudible]. What do they fear the costs
[inaudible]. And I wouldn't say that they're never going to [be confusion?]
on the native understanding of the differences between biomedical research
and anthropological research. For instance, Hank raised, had a resolution
that ws just recently passed at the Affiliated Northwest Tribes of Indians
conference in Portland, Oregon. It represents the tribal governments
of 15 tribes [belonging to?] Washington and Oregon, western Montana, Idaho,
and northern California, where they have looked at [original?] members.
[inaudible]. But they also have [referred?] in the position that
any federal funding of any genetic research that impacts their tribes,
their governments, their people, their territory, requires direct community
[inaudible]. And so [inaudible]. But there hasn't been that
much confusion. I think it's been alluded to, that, you know, well,
these native folks just don't understand, you know, there's a real difference
here. That's something that [we?] are very clear about [inaudible].
Greely: Yes, Judy?
Q: [A few?] years ago, I understand that you gave your copy of your
original conversation [inaudible], and I find it difficult to understand
why [inaudible]. On your study, you had agreed and told the community
that it would be anonymous [inaudible] --
Greely: That's not entirely correct. We told them that the genetic
findings, the original manuscripts, they would have the option to review
those, and then they could petition whether, for the genetic findings,
they wanted their names [attached?].
Q: In all of the subsequent publications, their names are [inaudible].
Greely: There's only one -- we covered this yesterday, when you were
gone. There's only one publication with the community's name, and
that's because their contract was [inaudible] publkic document. And
we concluded that to not make it would be to give them an illusion of anonymity
that in fact, we could not afford.
Greely: Yes. In fact, through much of the negotiations [inaudible],
I kept saying, "Other people are going to hear about this" -- [tape ends