First, the HGD Project is a PROPOSAL by a group of scientists
(largely, but not entirely, anthropologists and geneticists -- and
not universities, at all) to collect, preserve, and study the
diversity of the genetic inheritance of our species. The HGD Project
is not at all involved with the U.S. Human Genome Project. The
Human Genome Project, a $175 million per year "joint venture" of the
U.S. National Institutes of Health and the U.S. Department of
Energy, aims to sequence entirely the 3 billion base pairs of "the
human genome," but with its concentration on North America and
Europe, it will in effect tell us everything about the genes of one
French farmer and one little old lady from Philadelphia -- but
nothing about the rest of our species. The HGD Project wants to
change that, by collecting DNA samples from, as a start, 400 to 500
human populations around the world (out of about 4,000 to 8,000).
The Project will preserve those samples make them available to any
scientist for research. The Project itself will do some elementary
analysis of the samples; that analysis, plus any more detailed work
done by those who use the samples, will be deposited in a database
for use by any interested researchers.
The populations that will be studied will be populations that choose
to participate (and those individuals within the populations that
also choose to participate). The Project has compiled some lists of
some populations as examples of the kinds of populations of special
interest -- for historical, cultural, genetic, or other reasons --
but those have been intended only as examples, and largely as
examples to show possible funding agencies what the Project has in
mind. Some of those listed populations are quite large; some are
very small. European and North American populations are included --
this is not intended as just a sample of "endangered" and "exotic"
populations, although small size is one issue that might give
sampling a population a higher priority. No population will be
sampled without its fully informed consent and without the
participation of experts, often anthropologists, who can assure that
the Project and the population understand each other. (Some
populations may end up receiving grants to sample themselves.)
We have not "officially embarked" on a "global mission" (that's a
loaded noun!) to "'immortalize the DNA make-up of cultures
considered to be on the brink of extinction so that 'their role in
human history can be preserved.'" None of us -- anthropologists,
geneticists, or (in my case) lawyer -- believes that a culture's
"role in human history" can be preserved by saving some DNA, nor do
we believe that such DNA preservation should or will be used as an
excuse to stop efforts to preserve the living culture. As to the
charge that "from beginning to end, the very people from whom the
samples are being taken are not being consulted . . .", we haven't
even reach the beginning of the Project -- and the Project is not
collecting any samples (except possibly a few in Europe, through the
European regional committee).
The Project is still in its planning phase. It now has a structure,
with an international coordinating committee, various regional
committees, and ethics subcommittees. Two regional committees have
already been organized, one for Europe and one for North America.
(I am the chair of the Ethics Subcommittee for the North American
Regional Committee.) The European Committee has some small
operational funding from the European Community; the North American
Regional Committee has no funding as yet and is doing no collecting.
It is seeking funding from various governmental agencies and from
some private foundations. It has not sought -- and I do not expect
it to seek -- any funding from commercial sources.
The Project most emphatically does not want to patent anything from
these samples. Its organizers are not involved in this Project to
make money, nor do we wish to repeat the sorry story of plant
genetic diversity and the developing world. Although we think it is
highly uncertain that any products of commercial value will arise
from the Project, we are committed to ensuring that financial
benefits from any such products flow back to the sampled
populations. Implementing that commitment involves tricky questions
of U.S. and international patent and contract law, but we will
resolve them. In fact, I spent a good part of last week working
(with the World Council on Indigenous Peoples and with Pat Mooney,
Executive Director of RAFI, of which more later) to get the U.S.
government to withdraw a patent application it had filed for a
cell-line made from blood donated by a Native American from Panama
(from the Guaymi people) for epidemiological research. This
application had nothing to do with our Project (and was filed, in
fact, because of a virus that infected those cells and not the human
genetic material they contained), but I believed, from my work with
the Project, that the U.S. application was a bad idea. (I think
our efforts succeeded.)
The Project has no implications for biological warfare. First, as
far as we know (or expect to discover) there are NO genes that
define an ethnic group. All humans share largely the same pool of
genes. Some variants are more common in some populations than
others, but there is no variant that only the, for example, Irish
have and that all non-Irish do not have. Many Native American
populations have a very high percentage of members with group O
blood. A weapon that killed everyone with group O blood might kill
80% of Native Americans -- and 35% of the rest of the population.
Second, even if there were such ethnic specific genes, scientists
don't know how to kill a cell just because they know the sequence of
its genes. If they did, those disease with known viral, bacterial,
or fungal causes -- like AIDS -- could be eliminated. And finally,
if someone could design such a biological weapon, they wouldn't seek
genetic samples through a large, public program like the HGD. They
would sneak around and take blood samples from two or three members
of the targeted population in a very quiet manner. The size and
public nature of this Project actually helps guarantee that it will
act ethically, unlike the scattered and invisible way in which
research into human genetic diversity might otherwise proceed.
The Project does plan to meet -- a lot -- with representatives of
indigenous peoples. The international committee (which includes
among its members at least one person who is from an indigenous
African community) plans to hold annual forums for international
organizations, indigenous peoples' groups, scientists, and others.
Eventually, that forum is expected to elect the members of the
international committee. The North American Committee is seeking
funding to meet with Native Americans and other indigenous peoples
-- and pursuing informal contacts while we look for money for more
face-to-face meetings. In fact, if we can find the money for it,
we'll be sending at least one person to the General Assembly of the
World Council of Indigenous Peoples this December in Guatemala City.
Whether the meetings we will have would be in exactly the same
format, and under the same sponsorship, intended by the SAIIC is
still unclear, but as the Project moves toward beginning its
operations, it certainly must and will meet with, talk to, and
listen to indigenous groups and their representatives.
Neither the National Center for Human Genome Research (Dr. Collins)
nor the Department of Health and Human Services (Secretary Shalala)
is as yet involved in funding the Project. It is not clear that
either will be interested in providing funds. Letters to them will
probably attract a form letter response, saying that they've got
nothing to do with this project. Right now, we are most actively
pursuing funding -- about $1 million year, we hope -- from the
National Science Foundation, but even that probably wouldn't being
until October 1994.
Most of the information in the SAIIC posting came from a May press
release from RAFI, Rural Advancement Foundation International, and
the posting asks that you send copies of any letters to RAFI as well
as to SAIIC. Since that press release, I have had many talks with
RAFI, as well as with the World Council of Indigenous Peoples. I
cannot (yet) say that those groups support the Project. Some
differences remain between us, in part about the necessity of a
United Nations role, though I am very hopeful that those differences
can be bridged and that those organizations will support the
Project. I can honestly say that, by explaining (and clarifying
even to ourselves) our positions on intellectual property, on the
process of informed consent, and on the irrelevance of the Project
to biological warfare, we have reduced some of their concerns. I am
sending a copy of this posting to RAFI in the hope that, as it was
invoked by the SAIIC posting, it might clarify its position for the
readers of NATIVE-L. (And, of course, I'm also sending a copy to
the SAIIC -- though I should note that, as far as I know, no one
from SAIIC talked to anyone from the Project before sending their
posting . . . or, apparently, read my earlier postings on this
list.)
As always, I welcome your questions or comments about the Project.
Please do not hesitate to contact me at
rg.htg@forsythe.stanford.edu, either with an individual message or
through a general posting.