Tuesday morning a posting discussed the Human Genome
Diversity Project. I am involved in that effort and have discussed
it before on this mailing list. This seems like a good time to
bring Native-L readers up-to-date on the Project.
In early September this year, an international congress
agreed to an organizational structure for this Project and reached
some basic conclusions about how it should proceed. The Project is
a non-governmental effort by scientists around the world to
coordinate research on human genetic diversity. It will have an
international steering committee, eventually to be selected by an
annual international forum, attended by scientists, representatives
of indigenous peoples, representatives of relevant international
organizations (such as UNESCO, for example), and others. The
international steering committee will have two standing
subcommittees, one on ethics and one on databases. Fundraising and
control over most operations will be handled by regional committees.
The two regional committees that are currently most organized appear
to be the European committee, which has some funding from the
European Community, and the North American committee, which is still
seeking funding.
The Project wants to do four things: collect DNA samples
from populations -- large and small, indigenous or otherwise --
around the world, preserve those samples in order to make them
available to any scientist who wants to do research with them, do
some basic analysis of all the samples, and collect and make freely
available the results of the analysis and research through a
database. The goal chosen as possible, though difficult, is to
collect DNA samples from about 500 of the world's 4,000 to 8,000
populations within the next five years.
No populations have been, or could be, "selected" for
sampling. Some populations have been listed as examples as
populations that would be particularly interesting for sampling.
Some kind of list of examples is essential for seeking grant funding
-- otherwise, the first question you have to answer is "don't you
even know what populations you want to sample?" One of the many
criteria for picking examples of interesting populations was small
size. For example, one group in Tierra del Fuego reportedly has
only two members. Should those people die, or, perhaps more likely,
move to a city, sampling may more difficult or impossible. The
actual collection of samples will depend on the willingness of the
population to be sampled, as well as on the interest of an
anthropologist or other person knowledgeable in the population's
culture to ensure that the collection is done in a way that provides
true informed consent and that comports with the population's
culture. If populations do not wish to participate in the Project,
they will not be included. The list of examples was made solely as
a list of examples, without any attempt at that point to determine
whether the population would like to participate or whether any
anthropologist or other expert would be available.
The Project recognizes that it is legitimate for the sampled
populations to wonder what's in this Project for them. The answer
may vary from population to population. Some populations may be
quite interested in the historical story that may be read from DNA,
tracing their connections to other populations and their ancestors'
migrations. Other populations may suffer from diseases that appear
to have a genetic link, such as sickle-cell anemia in some African
and African-American population or diabetes among some Native
Americans. This Project may lead to progress in understanding,
preventing, or curing those conditions. In other cases, the
population may receive direct medical services in the course of the
collection process, as medical personnel may be made available as
part of that process. The Project would like, but is unlikely to
receive, $25 million over five years to study 500 populations.
That's $50,000 per population. For that money,the Project could not
eliminate poverty or end the oppression of any of the populations it
samples, indigenous or otherwise. Nor do we have any reason to
believe that this scientific research funding would be used to, for
example, buy land for the Cayuga Nation if it were not used for the
Human Genome Diversity Project. More likely, it would go to
something like the superconducting super-collider. But the Project
will provide some benefits to populations that choose to
participate.
More generally, I think the Project will have broader
benefits for indigenous populations and for all us humans. The
Human Genome Project, the $3 billion, 15 year undertaking to
sequence "the" human genome, is a separate undertaking from our much
smaller effort, but it, in a way, is the smaller project. It will
eventually publish a sequence of nucleotide base pairs, taken
largely from samples from white North Americans, and proclaim that
it is "the" human genome. But each human (at least, each
non-identical twin and, to some extent, even identical twins) has a
different genome. Some of those differences, albeit very minor
ones, reflect the differing histories, travels, and marriages of
different current populations. We can acknowledge the diversity of
our species only by studying that diversity, not by pretending that
an American genome is "the" human genome. At the same time,
studying the diversity should help us see better how closely related
all humanity is -- that we are, in literal fact, an extended family.
Improving that kind of understanding should help all the world's
human populations.
The issue of intellectual property rights has caused
misunderstandings between the Project and some groups representing
indigenous peoples, including the World Council of Indigenous
Peoples. The Project was viewed as similar to plant prospecting
trips, that had enriched the genetic stock available to western seed
or pharmaceutical companies, and ultimately their profits, without
providing any benefit to the people who had nurtured and
domesticated those plants. Most of the scientists involved in the
Project believe it is unlikely that the human DNA samples will lead
to any commercially valuable products. Even if it does, the Project
is not a drug company and has no funding from such sources, nor
would it patent anything it finds or make any profit from its
samples. At the international conference in September, the Project
decided definitely that it would try to protect the intellectual
property rights of the sampled populations in the DNA samples it
collects. The exact manner of that protection is still up in the
air, but the Project is committed to ensure that financial benefits
from the Project, in the event there are any, will flow back to the
sampled populations. I personally have talked with representatives
of the World Council of Indigenous Peoples on this issue and believe
that the Project's position on intellectual property rights has
assuaged some of their concerns. I hope, and expect, that the WCIP
will be involved with us as we work to implement this goal.
In most areas, the Project remains in its planning stages,
without any significant funding. Part of that planning certainly
includes consideration of the ethical and social issues raised by
the Project. We are currently seeking funding to allow us to
explore those issues in more detail, including through regular
contacts with indigenous populations and the groups that represent
them. I have just been named chair of the ethics subcommittee of
the North American Regional Committee, and would welcome your
thoughts on these issues, as well as suggestions of people to
contact.
Finally, I like Star Trek: The Next Generation, and Deep
Space Nine is growing on me, but I have noted that those programs
portray a much richer diversity of humanoids than of humans. Even
those crew members who are not white seem to be rooted firmly within
existing western cultures, with the possible partial exception of
Keiko. Only aliens seem to be allowed substantially different
cultures from "earth standard." I find that mildly annoying -- and
I think it is the kind of misperception that the Human Genome
Diversity Project could help counteract, not encourage. This is no
more a museum preservation project than any ongoing study of any
culture or any population's history. And it certainly isn't
Jurassic Park. To me, it seems a small and worthwhile investment
in improving our understanding of our human family.
I'll be happy to try to answer questions about the Project
or to get your suggestions about it. You can either post on the
mailing list or send directly to me, at
rg.htg@forsythe.stanford.edu, depending on your view of the general
interest in your question or comment.