Reply Today's Message -- "Call for a Campaign Against the Human
Genome Diversity Project"
>From -- Prof. L. Luca Cavalli-Sforza, Department of Genetics,
Stanford University, and Prof. Henry T. Greely, Stanford Law School,
members of the organizing committee for the U.S. Human Genome
Diversity Project
Today we read with great concern a message on this network seeking
to enlist support to stop the Human Genome Diversity (HGD) Project.
That message conveyed factually incorrect and grossly misleading
information about the proposed Project and, more importantly, was
deeply wrong in its stance toward that proposed Project.
The HGD Project in the United States not collecting any samples, it
is not preserving any samples, it is not analyzing any samples.
With the exception of a small planning grant that will be exhausted
this September, it has no funding. The Project's organizing
committee exists solely to plan such a project and to seek funding
for it.
The goal of the Project is to increase the body of scientific
knowledge about all the earth's peoples. Existing research efforts
on human genetics have focused almost exclusively on citizens of the
United States and Western Europe, yet we know that all human
populations -- and, indeed, all humans -- are, to some extent,
genetically distinctive. Much of that distinctiveness is
disappearing, sometimes through physical extinction, more often
through migration, assimilation, and intermarriage.
The proposed Project, as currently conceived, would collect samples
from many populations, throughout the developed and developing
world. The number of populations to be sampled remains unclear,
although roughly 400 to 500 has been viewed as a target. All
samples would be taken only with the full informed consent of the
donors. Blood samples from 25 or more individuals from each of the
populations would be transformed into cell-lines and preserved
indefinitely. Researchers from all over the world could then obtain
samples of the cell-lines for analysis of genetic variation. We
expect that the cell-lines would be preserved both at a repository
in the United States and in regional repositories around the world.
Analysis of human genetic variation holds the keys to answering many
fascinating questions about human evolution, human history, human
linguistics, human adapation to different environments, and even
human diseases. With every passing year, the ability of science to
answer those questions is irreplaceably eroded with the
disappearance of more distinctive populations.
This kind of research into genetic variations among human
populations is currently proceeding in a haphazard and largely
invisible way. The proposed HGD Project would be an effort to
coordinate this work and make sure it is done with the highest
standards, scientific and ethical.
The proposed HGD Project is not and will not be a commercial
venture. It is thought the chance that this research will lead to
the devlopment of commercially valuable products is very remote.
Our current planning anticipates that this unlikely event is not
impossible and so we are seeking to ensure that, should the
cell-lines have commercial value, the benefits will flow back to the
sampled populations.
It is important to stress again that the Project remains in the
planning stages. Those planning stages include issues of ethics as
one of their central concerns. Last February, the organizing
committee held a one day workshop solely on the ethical implications
of this research, in which representatives of groups concerned with
indigenous peoples took part. Since that time we have had some
contacts with other such groups or individuals, including
communications with RAFI and with the World Council on Indigenous
Peoples. We hope to have many more such contacts. (As far as we
know, we have had no contact with the authors of the message that
sparked this response. They have called for the proposed Project's
destruction without talking to its proponents, which is probably
responsible for the many factual errors in their message.) This
project can only succeed if it has the participation of the sampled
populations and if it fully respects their interests and autonomy.
We firmly believe that the proposed Project would not only be
consistent with the interests of indigenous peoples -- and all the
world's peoples -- but would further those interests substantially
-- more so than any other politically likely use of the amount of
funding involved. Professor Greely of Stanford Law School is
primarily concerned with the wide range of ethical issues raised by
the proposed Project. He welcomes your communications, at
rg.htg@stanford.forsythe.edu or by fax at (415) 725-0253. We invite
your inquiries and comments about the Project and, far from
expecting your opposition, we hope to have your support and
participation as we move toward trying to implement the Project.