Pergamon

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Sm. Sci. Med. Vol. 39, No. 5, pp. 603-606. 1994

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EDITORIAL
INTERROGATING

THE HUMAN

DIVERSITY

PROJECT

LOCK

MARGARET

In his book Marvelous Possessions Stephen Greenblatt explores the way in which, at the time of the
discovery of the Americas new and wonderful
knowledge about the natural world, among many
other things, was garnered from native inhabitants,
taken by force or in exchange for cloth, and spirited
away to be stored in European libraries and archives
for posterity. As his closing paragraph poignantly
reminds readers, however, Greenblatts theme is not
simply one of massive physical and intellectual exploitation. He describes a visit to the village church
in Tlacochahuaya in the valley of Oaxaca where he
discovered, tucked away from view in a niche, a stone
carving of the Mixtec god of death gazing down from
the ceiling into the face of the crucified Jesus whose
effigy was prominently displayed in the nave. In
commenting that the divinities have exchanged this
sightless gaze, this perpetual circulation, for more
than four hundred years [l], Greenblatt seeks to
illustrate the contradictory forces of resistance and
assimilation at work when exotic Outsiders make
contact with the Other.
It is evident that circulation of ideas and knowledge has accelerated geometrically since the time of
Cortes, and today the postmodern technology of
electronic communication daily sets up unlikely juxtapositions between tradition and late modernity.
Native-L, an aboriginal, First Peoples news net, has
been humming lately with commentary and letters of
protest relating to the proposed Human Diversity
Genome Project. On 21 December 1993, for example,
Chief Leon Shenandoah and the Onondaga Council
of Chiefs sent an E-mail communication
to the
National Science Foundation in Arlington, Virginia
demanding to know why the Project had progressed
to its fifth meeting (there had in fact been three
official workshops) without discussion or consent of
the indigenous nations and peoples it affects, a
situation which the Chief and his Council find unconscionable, and one which violates the canons of
anthropology and science. This letter followed an
account given a month earlier on the same network
of the proposed $23 million dollar Diversity Project
in which up to 15,000 human specimens will be
collected, many from isolates of historic interest. A
hilarious commentary which started out: Didja
ever notice how come there aint no Injuns on
STAR TREK? completed the communication. A

GENOME

Californian lawyer directly involved with the planning of the Project has responded at length several
times on the network, reassuring readers that thus far
there have only been planning workshops and that
the Project as such has not yet started. He described
its proposed organizational structure, selection of
populations for sampling, and eventual involvement
of indigenous peoples at annual Project forums. He
has also been in correspondence with RAF1 (Rural
Advancement Foundation International), the organization which first alerted the World Council of
Indigenous Peoples to the Human Genome Diversity
Project, and which has for many years taken an active
stand over the patenting in the United States of the
genetic plant material obtained from many parts of
the so called under-developed world.
This electronic skirmish is a fine example, I
believe, of the way in which knowledge, which formerly might have remained reasonably contained
within the discussions, archives, and publications of
academe and industry, today becomes quickly available for public debate and politicization due largely
to global assimilation of sophisticated technologythe native gaze, hypersensitive to exploitation (and
no wonder), glowers back.
The Human Genome Diversity Project was conceived in 1991 by two geneticists, Allan Wilson (since
deceased) and Luca Cavalli-Sforza in order to gain
further insights into human origins and evolution,
migration and reproductive patterns, adaptation to
various ecological niches, and the global distribution
and spread of disease. The ultimate goal, stated at the
first organizational meeting in 1992, is to find out
who we are as a species and how we came to be [2].
In order to undertake this ambitious task the group
printed a request in the journal Genomics asking for
researchers world-wide to assist them in an ad hoc
way by collecting DNA samples from hundreds of
indigenous populations in order to create a database
for the benefit of the scientific community. At the first
meeting, after extensive discussion, it was agreed that
for the Project proper DNA samples will be collected
from between 400 and 500 hundred populations, in
addition to European populations (to be handled
separately). The tentative plan is to take, as a minimum, blood samples from 25 individuals in each
population which will then be preserved in permanent
cell lines for future analysis (ensuring that there will
603

604

Editorial

be no further need to return for more blood at a later

date), and also to collect as many extra blood samples
as proves possible from each selected population.
In
addition, tissue scrapings will be made from the inside
of the cheek, and probably hair root samples will also
be collected.
There has been considerable
debate at the workshops as to what constitutes
a representative
population
for sampling
purposes,
a debate
made
especially difficult since the project has several major
objectives. Should one sample primarily from isolated
well-defined ethnic and linguistic groups or should
a geographic grid be created and samples collected
from indigenous peoples spread more or less evenly
around the world? Financial and logistical limitations
put further major constraints
on sample selection.
Originally the collection of 50 blood samples from
200 groups was suggested, based on arguments that
50 is needed to give an accurate estimation of gene
frequency in a population
and, perhaps even more
telling, that one person can bleed 50 people and get
to the airport in one day[2]. However, several geneticists pointed out that, because a large number of
DNA markers are now known, it is sufficient to
examine as few as 25 or even 10 samples at several
gene loci in order to gain reliable insight into genetic
variation among a population. Thus, 400 populations
could be sampled.
However,
by only taking 25
samples for immortalization
as cell lines, it was
conceded that the ability to understand how susceptibility to specific diseases is distributed among populations would be impaired within the given financial
constraints.
Assuming that the reporting in Science is an accurate reflection of the discussion that took place, then
the workshop
proves to be grist for the cultural
anthropologists
mill, since it is evident that a population, far from being a readily definable natural fact,
is a contested and pliable concept, created to assist in
the answering of specific questions and hypotheses.
Race has been banished (as unscientific and politically loaded) from discussion,
but ethnicity, an
ever-shifting political/cultural
category has, in effect,
replaced it as the taxon denoting the demarcation
of
likely biological difference among human groups.
Rather few cultural and linguistic anthropologists
are
comfortable,
I believe, with an assumption of a close
correlation
between
ethnicity
based
on shared
language use and a common biological heritage. The
geneticist Cavalli-Sforza,
for example, suggested that
in the New World, groups would be candidates for
classification as an aboriginal population if they were
in place as of 1492, well defined either by language,
geography,
or endogamy,
and with little recent
interbreeding with other groups [2]. To most anthropologists,
such an explanation
sounds naive, and
ignores the continual
migration
and intermarriage
of Homo Sapiens over many thousands of years. It
is well known that a good number
of cultural
anthropologists
are ideologically disposed to denying

biological diversity among the human species as a

subject worthy of investigation, often because of their
sensitivity to its possible misapplication
[3]. If this
project is to have some success and avoid being
hijacked into the service of pseudoscience,
racism,
and nationalisms,
however, it will be important
to
have frank, public discussions from the outset about
the way in which taxa such as populations
and
species are necessary, but flexible, heuristic devices
created by biologists into order to facilitate measurcment and comparison. The greatest danger. as always
with debates involving biological variation. lies in the
interpretation
of culturally created concepts such as
ethnicity or population
as natural facts. from
which extrapolations
are made to justify exclusionary
or containment
policies.
The exercise is likely to confirm what is already well
known (but still conveniently
forgotten
by many),
namely that there is remarkably little genetic divergence among the human species based on social and
cultural demarcations.
The Human Genome Project
(HUGO), with which the Diversity Project is loosely
affiliated, has capitalized on this lack of variation in
its effort to create a map of what will be accepted
as the human genome, an endeavour described by one
biological anthropologist
as ill-conceived
essentialism. Assuming the endeavour is successful. the end
product will be a standardized
abstraction
created
out of research conducted
primarily on European
and a little Asian genetic material. We will all be
understood
as deviations from this normal mythic
genome. As the biologist Lewontin has pointed out,
the human DNA sequence will be a mosaic of some
hypothetical
average person corresponding
to no
one and polymorphism
will be ignored [4]. Parddoxically, while we share most of our genetic material in
common with other members of our species. each
individual being genetically unique is, at the same
time, the primary repository of human variation. One
of the objectives of the Human Genome Diversity
Project is to counteract in some measure the excessive
standardization
and parochialism
associated
with
HUGO, while at the same time contributing
to a
further debunking of racial mythologies by showing
the paramount
importance
of individual variation.
However, in addition, the Project has an expressed
objective of locating those relatively few genetic
markers which are concentrated
in specific ethnic
groups due to random mutation or the interaction of
biological and cultural adaptions in specific ecological niches. Because of its interest in population based
biological difference, the Project will inevitably find
itself mired in political mud-slinging
unless its motives are impeccable, and the limitations and possible
co-optation
of science fully recognized.
It was after the second meeting that alarm bells
started to ring among indigenous peoples, because at
that time 722 populations
were selected as examples
from among 7000 groups recognized
as eligible
for possible inclusion in the Project. There was.

Editorial

apparently,
agreement
among the more than 50
people at the meeting, the majority of whom were
anthropologists,
that highest priority should go to
unique, historically
vital populations
that are in
danger of dying out or being assimilated [5]. At the
top of the list headed in Science as A few of the
Chosen were, among others, the !Kung, the Hadza
of Tanzania, the Yamomami, the Chukchi of Siberia,
and the Onge who live in the Andaman islands off
Malaysia. One of the groups singled out for study, the
Etas of Japan, immediately signals cause for concern. This pejorative name, no longer used in Japan,
designated an urban outcaste group, which, despite
marriage prohibitions,
never remained biologically
isolated. The language used in the two Science articles
which emphasizes
the urgency of capturing
DNA
samples from indigenous, exotic people before they
die out is very disturbing,
and the irony of these
remarks was not lost on contributors
to the Native-L
network. It was after Iroquoian representatives
found
their Nation on the list that they took to E-mail to
publicize their concern, in particular because they had
not been consulted about inclusion in the Project.
Greek the Stanford lawyer on the Project replied in
E-mail that the list had been created solely to indicate
examples of suitable indigenous groups; he insisted
there was no expectation
that groups or individuals
would participate
unless they first gave their fully
informed consent.
As far as the ethics of the proposed
project is
concerned, at least three areas of concern have been
raised at Project workshops. The first is to do with the
collection of data and informed consent. It is agreed
that workers who draw blood samples must be
alerted to possible accidental exposure to disease. The
question of confidentiality
with respect to stored
DNA samples has also been brought up. In addition,
donation of services, especially medical services to
participating
populations,
has been discussed, but
such an arrangement
would be subject to local
licensing and dispensing requirements.
Given the isolation of many of the populations
involved, their non-literacy, and lack of acquaintance
with a cosmology grounded in molecular biology,
obtaining informed consent will be a contrived exercise, which, aside from human rights issues, may have
some unforseen results. One of the members of the
North American committee for the Diversity Project
noted, for example,
that participants
in a prior
research project had felt insulted by being required to
sign or put a mark on a form; their attitude was that
having showed up in order to take part, that should
be sufficient. Informed consent, a practice grounded
in the Euro/American
philosophical
heritage, is a
dubious concept even where no marked language or
cultural differences
exist; in Japan, for example,
although
argued about, informed consent has no
widespread application to date. Project members are
aware of the need to involve translators
capable of
explicating
both local values and project require-

605

ments and goals. However, in situations where participants have no possibility of fully conceptualizing
the objectives of the project, where societal values are
not grounded in the inherent rights of individuals,
and where there is no legal recourse should problems
arise, before the Project starts, discussion of what
exactly informed consent, right to refusal, and third
party mediation
between different knowledge
sets
might mean, is vital. Consent freely given is obviously
the ideal, but to imagine that consent can be fully
informed or given autonomously
in the majority of
cases is unrealistic.
This being said, I think that
women living in the developed world are currently
less likely to be able to give informed consent about
the purported risks and benefits in connection with
the prescription
of hormone
replacement
therapy
than are indigenous peoples with regard to providing
a single blood sample for the Human Diversity
Genome Project (how the blood is managed once
collected is another matter, see below). The point of
suggesting further careful discussion ahead of time is
not to derail the Project, but to heighten the possibility for an encounter which does not leave participating peoples feeling that they are left only with a
bruised arm, something which Project organizers are
clearly very sensitive about. However, they may be
less sceptical than are many cultural anthropologists
about the very notion of informed consent as a tool
for negotiating bodily practices in situations where
unequal power relations are evident. Thus, some of
the Project organizers
may be tempted to reach
closure without doing justice to the complexity of the
issue, in particular by avoiding a discussion of their
own culturally produced assumptions
in connection
with human rights and scientific investigations.
A second area of concern is over the question of
patenting. RAF1 has pointed out that, at an average
total cost of $2300 per sample, the Human Genome
Diversity Project will spend more money gathering
blood than the per capita GNP of the worlds poorest
110 countries. They also remind us that more than
90% of all the plant germplasm
collected in the
southern
hemisphere
in the last two decades has
ended up in gene banks in Europe and North
America, and that this material has yielded billions
of dollars to agribusiness [6]. The patenting of this
plant genetic material has become a controversial
topic and the question of royalties is now on the
table.
A search undertaken
by RAF1 in 1992 revealed
that the American Type Culture Collection already
contains
1094 human cell line entries, and patent
applications have been made on more than one third
of them. The U.S. governments
National Institute
for Health has been a very active applicant. More
than one patent application has already been made
on cell lines taken from indigenous peoples including
one from a Panamanian
Guaymi Indian. This application was withdrawn
as the result of pressure
brought to bear by, among others, Greely, the lawyer

606

Editorial

who is part of the Diversity Project. Indigenous communities and involved scientists alike are now alert to
the possibility of governments
and business earning
enormous royalties from genetic material taken from
individuals whose very survival is in question. Moves
are being made to create internationally
binding legal
protection of data, something with which the European parliament concurs, but the Americans and the
Japanese have so far failed to recognize.
The Project plans to respect what has come to be
known in connection
with the genetic manipulation
of indigenous crops, as intellectual property rights.
Should a blood sample prove to be the source for the
development
of a vaccine, for example-something
which the involved biological anthropologists
consider to be unlikely-then
the local population
and
individual donors maintain rights to any profit which
accumulates; but the large question, as always, is how
to force commercially
minded interests into compliance. The Project has made it clear that appropriate
technological
transfer should be considered integral
to any benefits which accrue from the research. A
cautionary tale is provided by a recent case in which
Genetic Engineering News reported the discovery that
30 citizens of Limone, Italy are carriers of a gene which
is thought to be effective in reducing risk for heart
disease. This village has since been inundated not only
by journalists, but by Swedish and Swiss pharmaceutical companies
and scientists, jostling
for blood
samples while making hasty applications for patents.
A third area of concern is with possible genocide.
The Projects plan as it stands, finances permitting, is
to store duplicate samples of the DNA cell lines with
recognized governments
of the regions in which involved indigenous
peoples reside, or else with regional institutions.
RAF1 is concerned, for example.
as to whether the six indigenous communities in Iraq
designated
for sampling for immortality
in Baghdad, can be sure that their cell lines will not be
tampered with in some nefarious way which might
lead to the destruction
of the peoples themselves.
Project members have taken this charge seriously but
believe that, given the genetic variation within indigenous groups, the shared genetic make up with all
other human populations
and the dollar cost involved, genocidal attempts are neither a realistic or
feasible possibility.
RAF1 is also concerned
that
foreign aid budgets may be diverted into the Diversity
Project and away from activities having immediate
benefit for local recipients.
The scientific goals of enhancing
knowledge
in
connection with human phylogeny and paleopathology, of tracking down prehistoric
and historical
migration routes prior to the formation of contemporary social groups, and of establishing
the present
distribution
of disease, genetic variation,
and immuno-responses
among local populations
are laudable and exciting endeavors.
Clearly there will be
intrusion into the lives of individuals and societies
who thus far have benefited little, if at all, from

scientific insights,
nevertheless
the objectives
are
worthwhile, provided that population specification is
subject to further critical interrogation.
Participants
will in all probability gain little or no direct benefit
from the present investigation
aside from some immediate compensation
together with the possibility of
finding out in biological terms where they came
from-information
in which some groups have no
interest, since their mythological canon stands them
in good stead. while others have shown a keen
interest in this aspect of the project. It is also possible,
for example, that the distribution
and mechanism of
a genetic predisposition
to diabetes, prevalent among
indigenous populations
of North America (but only
manifested as disease since the middle of this century)
could be better understood-not
to create a genetically determined
argument
about diabetes, but to
broaden the knowledge of patients and researchers
alike into the relationship
among culture, environment, and genes.
It is clear that several of the accusations
made
against the Diversity Project are erroneous.
For
example, the project is simply in the planning stage
and not under way-nothing
is at yet consolidated,
contrary to what has been suggested on the E-mail
circuits. How-ever, the dissatisfaction
and fear being
expressed among certain indigenous groups is understandable,
indeed probably
unavoidable
given the
overall track record of past encounters
with forces
from the outside. Had one or more indigenous
anthropologist,
geneticist. lawyer, or other specialist
been included from the outset in the first workshop,
and had much more communication
flowed from the
original co-ordinators
of the Project to those who are
the potential
subjects of the research,
then the
present confrontation
might have been averted. Regional committees of the Project are now established
which will include local expertise. Possibly the damage can still be repaired with good will on both sides,
and perhaps (but I am doubtful), the daunting ethical
issues can be handled competently and not sabotaged
by mercenary interests. If these problems are contained, and if local peoples find that they wish to
participate, then the investigation of biological diversity and its inter-relationship
with culture is certainly
a project whose time has come.
REFERENCES

S. Marvelous Possessions: The Wonder of the

New War/d. The University of Chicago Press, Chicago,
1991.
Roberts L. How to sample the worlds genetic diversity,
Science 257, 12041205,
1992.
Holden C. Failing to cross the biologyculture
gap.
Science 262, 1641-1642, 1993.
Lewontin R. C. The dream of the human genome. NY
Rec. Books 28 May 1992.
Roberts L. Anthropologists
climb (gingerly) on board.
Science 258, 130@ 1301, 1992.
RAF1 Communique.
Parents, Indigenous Peoples, and
Human Genetic Diversity. Rural Advancement
Foundation International,
May, 1993.

I. Greenblatt

2.
3.
4.
5.
6.