At a concrete level, not very much has happened. The Project is
still largely in the planning stage. It recently was accepted as a
participating project by the Human Genome Organization (HUGO), an
international, non-governmental, non-profit organization. The
international executive committee of the HGD Project, which has 13
members from 4 continents, is to operate in conjunction with HUGO.
Regional committees continue to be organized. Committees exist for
North America, Europe, Africa, Southeast Asia-Australia-the Pacific,
and, I believe, East Asia and India. These regional committees are
expected to coordinate any activities in their regions. Any
sampling in Papua New Guinea, for example, would be coordinated by
the committee for that region, which is currently headed by Dr.
Susan Serjeantson of the Australian National University in Canberra.
As far as I know, only the European committee has any significant
funding. The North American committee has none, but continues to
seek it, largely from the US National Science Foundation, but also
from the U.S. National Institutes of Health. The North American
committee is also seeking funding for some aspects of its operations
(medical services and the ethics committees) from private,
non-profit foundations.
I continue to receive and respond to various questions in my role as
chair of the North American ethics subcommittee. The ethics
committee, as yet, has no funds, so it has not been as active as it
will be. Apart from preparing answers to requests, my main effort
on this Project in the last few months has been to research legal
ways to protect the property rights of sampled populations in their
genes.
I did travel to Quetzaltenango, Guatemala, last December, at the
invitation of the World Council of Indigenous Peoples to attend its
triennial General Assembly. As the WCIP's subsequent resolution
shows, I was not able to allay the concerns of that group. I was
glad at least to open a discussion with the group and its members
and I hope that both the WCIP and some of its individual member
groups will be interested in continuing the dialogue.
In response to the question from several days ago that sparked this
round of discussion, I don't know of many other published comments
on the Project by indigenous peoples. The WCIP put out a press
release opposing the Project last spring, as did the Rural
Advancement Foundation International. There have been two articles
about the Project in the newsletter of the South and Meso American
Indian Information Committee and one article about the Project in
The Eagle, an American Indian newspaper published by Mr. Elmer
Savilla. A Maori group in New Zealand also has passed a resolution
condemning the Project. And a letter from Chief Shenandoah to the
National Science Foundation has been widely distributed, including,
I think, on this mailing list.
I don't know of any publications from indigenous peoples'
organizations supporting the Project. I have heard that many
European populations have been eager to participate in the Project,
as are several African-American scientists and communities. Several
American Indian tribes have also expressed strong interest in
participating, with one tribe planning to submit its own grant
request for funding to do the sampling.
I believe the opposition to the Project by groups supporting
indigenous peoples has been based on a combination of a deep
suspicion of any interventions from the outside world (which is
entirely understandable in light of their recent history) and a set
of misunderstandings about the Project. I won't talk about all
those misunderstandings here, because that would repeat my earlier,
lengthy postings, but I do want to mention one. Perhaps the deepest
of these misunderstandings is the perception, which may have come
from some early press coverage, that the Project is ABOUT indigenous
populations, or, even worse, "disappearing" indigenous populations.
The Project is about sampling the genetic diversity of ALL of
humanity, not just the North Americans and Western Europeans
currently being analyzed by various genome projects. There are
4,000 to 8,000 human "populations" (depending on the definition).
Given funding realities, the HGD Project will be lucky to collect
and preserve samples from 500 of those before the turn of the
century. Some of the populations to be sampled will be indigenous
populations, some will not be. Some will be small, some will be
huge. And NO population will be sampled without the consent of both
the population as a group and the individuals from whom samples are
taken.
This is an exciting project that can provide important and
fascinating information about human origins and history, as well as
information that should be valuable for treating human disease. And
it is based on the idea of inclusion -- of counting all peoples as
part of "the human genome." The organizers of the Project, largely
geneticists and anthropologists, know that science has not always
treated non-western populations well. We genuinely want to do this
Project the right way, with respect for and the active involvement
of the populations that participate. We've made mistakes during the
planning process, but we're trying to learn from them as planning
continues.
I hope this posting is helpful. For further information about the
HGD Project, please feel free to contact me at
henry.greely@forsythe.stanford.edu or by snail mail at Stanford Law
School, Stanford, California 94305.