Declaration of Indigenous Peoples on Genome Project

Sun, 5 Mar 1995 09:25:32 -0600

project thread with some interest. But I had to wait until the weekend
to have the time to read and think about the different statements made on
the list. There are a number of thoughts brewing in my head, about
the Declaration of Indigeneous Peoples on the Genome Project, the Genome
Project itself, some responses to different people who have already made
contributions on the list. To avoid an excessively long entry I intend
to post these thoughts in a staggered fashion over the next few days.

For starters, my personal interest in the Genome Project more closely
springs from a number of sources:

* the growing number of students in the past few years who, when I have
started the section in Physical Anthropology on Human Genetics,
have come to me privately, and usually with no small amount of confusion
and emotion, to tell me of some newly discovered genetic condition that
they or a family member have. The last one was a tall, gangling young man
- one of my better students - who is afflicted with Marshan's Syndrome.
It struck me that he and the others with similar concerns, were,
very much, the children of the Genome project, with the conditions having
been identified only in the past few years. From these students I
did not learn very much about the history of the Genome Project, but
instead, got some insights into the emotional turmoil that knowing their
genetic conditions has provoked. Many of them would have rather NOT
known the gory details and were trying to figure out how to live with
their new knowledge - should they mate, marry, who should know? They
were all experiencing some kind of far reaching identity crisis, only
a glimpse of which I could glean from our discussions. I don't write
about this as ammunition to oppose or shut down the project, simply
to suggest that there are human consequences to this that are as
profound as any that I have come across that will certainly result and
grow in stature with time.

* secondly, I am interested in, fascinated by and somewhat worried
about such far-reaching technological developments. Can we find those
240,000 or so genes hiding somewhere within a mountain of several
billion particles of genetic junk. It is also fascinating that over time,
certain genetic conditions might actually lend themselves to treatment,
though I suspect there will be a rather large gap between identifying
certain specific genes and actual treatment. Einstein's quote
- approximated here - about human entry into the nuclear age comes to
mind - everything has changed except the way people think. Here we have
an enormously powerful human innovation. One can be for, against or
in between. Fact of the matter is, the project is here to stay and the
only worse than considering its implications, is not considering them.
Mike Lieber sketched out some of the possible technological benefits
of the program - the exciting possibility of finding new cures for
diseases. No doubt, research on Cancer, AIDS - just to name two -
will be strengthened by Genome Project research. My concern, simply
stated is who will control the process and how can it be - to the
degree possible - democratized, and not left in the hands of technocrats
and research scientists.

* thirdly a thought that the Genome Project could turn out to be for
Anthropology something akin to what the Eugenics Movement was for the
field in the early 20th Century keeps nagging at me. Perhaps my mind
is simply presently too riveted to early 20th Century Anthro? I am
particularly impressed with the way the field participated in a major
manner in shaping the public debate in this country on eugenics and
scientific views on race. This project is a natural for anthropologists.
It includes both genetic and cultural factors. Indeed I cannot think
of a field in the social sciences better situated than Anthro - with its
one foot in the physical sciences and the other in culture - to
contribute to shaping the future of the Genome Project. Lawrence Leichtman
pointed out that from its outset in 1988, the Genome Project has
shown concern for political and ethical considerations. This is true
from what I have read, and yet, still unimpressive, given the scope of
the project and the dangers of abuse. Still it says that at least
those involved in the project have the sense to know that in a profound
way that they are playing with fire and must proceed prudently.

Enough for now.

Rob Prince