Genome Project, 3 agendas, and many spin-offs

Mike Lieber (U28550@UICVM.BITNET)
Thu, 2 Mar 1995 21:15:59 CST

Amid the flames and counter-flames, at least at some point, there was an issue
or two. I was very impressed with Norden's summary and interpretation of the
Indigenous People's Declaration. It was clear, concise, and covered a lot of
ground. That the declaration represents a political agenda is without question
but so what? Why should indeigenous people have their own political agendas?
Whether or not the signers of the declaration represented a consensus of their
home communities is beside the point. Each voices a position in regard to
powers beyond his or her community that their communities have to cope with.
My own experience in Micronesia and now working in Chicago tells me that the
positions being voiced are certainly not unique to the communities represented
at the conference that generated the Declaration. I'm hearing the same
resentments being voiced by ordinary, apolitical West Side Chicagoans, by
people working in local agencies, and by community organizers. These folks are
sick of being objects of study, "We been studied to death--and for what?"
Pure motives don't cut it like they used to. People not only want to know
what's in it for them, but they also want to be in on the planning and design
of the research and have free access to its results and their interpretations.
It is no surprise, then, that the Human Genome Diversity Project would be
interpreted by many indigenous people as one more intrusion by researchers--
this time into their bodies. Norden is right--Sforza and his colleagues were
naive to think that the project would be greeted with universal approval.
I'm not embarrassed to be on the same side of the fence as Robert the Good on
this one. In the context of thinking colonized to the colonizer, the positions
taken in the declaration make sense.

This is not to say, however, that the geneticists' position does not also have
validity and sense in it's own contex . Pushing the frontiers of knowledge is
what these guys have been doing for their entire careers. Since the discovery
of the structure of DNA, the rapidity with which geneticists have been able to
trace the relations between genes and soma is really pretty astounding. With
the possibility of mapping the genome, tracing its network of chemical
pathways, and discovering how a normal cell-operates--and with the possibility
of injecting normal cells into the bodies of, say, MS victims so that the
normal cells eventually replace the mutant cells, the potential for combatting
disease without recourse to drugs is enormous. It is clear, for example, that
susceptibility to leprosy is genetically inherited. If the bacteria is around
in sufficient quantity, the susceptible person will be infected. The disease
can be controlled (not cured) but at great cost. It would be far cheaper and
less painful if the genes that confer natural immunity to the disease could be
injected into susceptible people to eventually replace their "susceptible"
genes. From this point of view, the total human gene pool is a vast reservoir
of natural immunity to the variable vagaries of the world's microbes and
mutant alleles. From this point of view, it makes sense to sample the world's
human populations to create a reservoir of human genetic diversity. But the
context of forward looking scientific research and the context of forward
looking political autonomy, of course, have collided head-on. They did not
have to, had the geneticists ever thought to ask indigenous people what they
thought prior to announcing the project. In their naivte, they have been doing
damage control ever since. Having worked with geneticists, I can say that the
world of the gene looks a lot bigger when it's the one you're in than when it's

There is a 3rd position, that of the evolution of systems (for lack of a better
phrase). Ross Ashby showed long ago that for any system--natural or
artificial--the viability (or sustainability) of the system depends on its
internal variety (the totality of the possible states it could assume) being
sufficient to match and exceed the variety of inputs from the environment to
which it is subject. If its environment is subject to change other than
cyclical variation, the variety of the system must exceed the variability of
the environment. For this reason, specialization for adaptability to a fine-
grained environment with low variability is a royal road to extinction for any
species, especially in terrestrial environments that can change rapidly.
Genetic specialization reduces internal variability by increasing the number of
genetic loci that are homozygous. We have seen plenty of analogues in our own
society as specialized occupations become obsolete and variety has to be
reintroduced through "retraining."

>From this systems point of view, conservation of humn genetic variability is
not all that different from much earlier programs of conservation of plant
variety. Several nations, including the U. S., maintain "seed banks" of older
varieties of plants, particularly wild and older cultivated varieties of
crops. In today's world of specialized, high yield corn, beans, grapes, etc.,
commercial crops have low tolerances for climatic and organismic variability
that can wipe out an entire crop in days. The idea of seed banks is to
preserve the ancestral varieties that were lower yielding but tolerant of a
much wider range of environmental fluctations. These seeds are our hedge
against disaster and our resource for developing other new varieties. As much
sense as this makes, I have to tell you that Congress's stinginess over the
years has resulted in our national seed banks losing about a third of their
inventories every year.

Finally, Norden rightly points out the implication of the commodification of
human culture and human bodies. This appears to be inevitable in the
atomized business of gene mapping, gene cloning, and gene replacement where
the parts are potentially replaceable. Earlier than replacebale genes, there
have been replaceable body parts--eye banks, sperm banks, etc.. But the most
disheartening spin-off of atomization/commodification, which indignous people
attending a number of conferences have siezed on, is the patenting and
commercialization of cell lines. The LA case in 1993 establishes legal
precedent for the right of a researcher to use a subject's cells without that
subject's permission, patent them, and sell them for a huge profit, none of
which goes to the original donor. While no one has accused Sforza of being
motivated by this sort of greed, no one can deny the likelihood of this sort of
exploitation of indigenous peoples, either. Who can guarantee the sort of
safeguards that would prevent it? and how could these be legally and
strategically ensured? Participants in the Human Genome Diversity Project are
wrestling with these issues now, however belatedly. I wish them luck.

I also wish us luck. Instead of trivializing these issues with slogans and
flames, I would invite you to do two things: act like anthropologists, as we
are in a particularly strong position to make positive contributions to this
overly polemicized debate. Second, write to your Congresspersons about
giving serious support to our seed banks, as this is a case where conserving
the past makes possible a safer future. I'm tired of being the only one
to write--they all think I'm a crank, which is actually true but irrelevant.

Mike Lieber