The only interest I see myself having in this debate is to try to serve in
the capacity of a moderator, to make sure that reasonable points made by
either side are acknowledged and addressed by the other, and that valid
questions are answered. I'm sure I have my own biases. Perhaps it will
help to tell you what they are (or at least what I see them to be), to try
to avoid later misunderstanding.
Having originated the NativeNet mailing lists, it should be clear that I
am quite committed to working to promote dialogue about and understanding
of the important issues of indigenous peoples. My interest in these matters
derives originally from a concern about the environmental crisis that looms
over us all. In 1989, when I attended the Tribal Lands conference at Smith
College, I learned the importance of understanding the issues of indigenous
peoples in order to come to any reasonable and ethical solution to problems
such as rainforest destruction. It is, in fact, in these kinds of areas
where the subject of what is being called "biocolonialism" is most urgent,
as organic substances used in traditional healing methods are exploited by
multinational pharaceutical companies, and where the kinds of cases talked
about in debates such as those between RAFI and HGDP are most at issue.
I admit to being very suspicious of the motives of the agents of the indus-
trialized, "developed" first world, including governments and corporations,
but I also am firmly committed to being logical and fair and examining each
instance of possible abuse of human or property rights on its own merits,
and I am sensitive to tactics such as name-calling and attempts to establish
guilt by association, as well as evasion of legitimate questions - by either
side in such a dispute.
Last night I read several articles in the issue (Volume 8, Number 4, Winter
1994) of the _Abya Yala News_ (published by the South and Meso American
Indian Rights Center) that I referenced in a note attached to Henry Greely's
article of 20 October which bear on this subject, including that written by
Debra Harry, identified in a sidebar as a Paiute Indian from Nevada (U.S.)
who is researching issues related to the Human Genome Diversity Project.
> From this reading, it seems clear that this issue is an important one and
that there are in fact good reasons to be somewhat suspicious of the HGDP,
but not necessarily on grounds that they have something to do with attempts
to patent genetic material such as the one involving the indigenous man of
the Hagahai people from Papua New Guinea's remote highlands, as reported
in the RAFI press release posted to NATIVE-L on 5 October. Ms. Harry's
article identifies a number of reasons for challenging the basic assumptions
of the HGDP, having to do with whether the data collected will be used as a
basis for challenging aboriginal territorial claims or rights to land,
whether the Project really has anything to do with developing treatments
for diseases, as has sometimes been claimed in its defense, how the infor-
mation it collects will be managed, who will have access to the data, and
for what purposes. My reading of the article leads me to believe that the
author is not necessarily intending to attack the HGDP as such, but to
indicate that it is possibly part of an overall program whose long-term
effects could easily be very deleterious to indigenous peoples and their
legitimate rights. Thus, Ms. Harry, at least, would seem to see the HGDP
as being the agent of attempts to patent genetic materials, rather than as
itself having such ends being part of its own immediate purposes.
This article ("The Human Genome Diversity Project: Implications for
Indigenous Peoples") seems valuable in clearly outlining some of the main
reasons for concern about the kinds of abuses of the rights of indigenous
peoples that become possible as the result of activity undertaken by the
HGDP unless certain safeguards which are not now planned are put into
effect. Though the HGDP itself may not have any plans to attempt to
patent life forms, it seems to be a legitimate concern that others might
attempt to do so based on information gathered from the database set up
and maintained by that project as well as from the genetic samples that
it will apparently maintain as part of its operation. As the article
points out, there are serious ethical issues raised by the practice of
granting ownership to life forms or the commodification of parts of the
human body, such as is apparently now being done, or at least attempted,
by commercial interests and agencies of the United States government.
Here is the final section of the article, printed under the title
"Recommendations":
Indigenous organizations need to alert all Indigenous peoples to the
work of the Human Genome Organization (the body governing the HGDP)
in order to prevent the taking of their genetic materials by this
project, or by free-lance scientists, and to assist groups in
reclaiming any genetic materials that have already been taken.
Indigenous people must engage in community education and discussion
about the full scope of this project and the potential dangers of
genetic manipulation before they decide whether to participate. It
is imperative that our communities become fully aware of the Project's
implications and begin documenting proposed or current sample collect-
ing. We need to form an international Indigenous research group to
determine the extent of existing international protections for human
materials, and to develop additional policies which insure the
protection of our intellectual, cultural and biological property
rights.
Indigenous people must call for a world-wide moratorium on the
collection, databasing, transformation, and commercialization of
cell lines and genetic materials of Indigenous peoples until
international standards and regulations are put into place which
fully protect the environment and the interests of Indigenous
peoples.
To get a copy of the magazine in which this article appears, please contact
SAIIC, the South and Meso American Indian Rights Center (saiic@igc.apc.org,
P.O. Box 28703, Oakland, California 94604, Phone: 510-834-4263, FAX: 834-4264).
Back on the subject of the discussion between the HGDP's Dr. Henry Greely
(hgreely@leland.stanford.edu) and RAFI's Edward Hammond (perezoso@nando.net,
rafiusa@harlan.pdial.interpath.net), I see my main interests being that both
sides provide complete and responsive answers to one another. In the RAFI
press release, there is mention of one Jonathan Friedlaender, identified in
that article as being associated with the National Institutes of Health
(NIH), but who, according to a personal message from Edward, admitting an
error, would seem to actually be with the National Science Foundation (NSF).
The press release mentions him as making a few statements connected with
the Papua New Guinea patent claim and says he had something to do with the
collection of blood samples in the Pacific, as well as having "participated
in the development of the HGDP and [being] among those at its founding
meeting." These facts seem to be advanced by RAFI to suggest a possible
linkage between the HGDP and the patent application. (In his personal
message to me, Edward mentioned a few additional things about Friedlaender
that would seem to associate him more closely with the patent application,
but he has not done so in this public forum.)
As I have attempted to point out to Edward, the simple fact (and I think
we can assume it to be a fact unless shown not to be) of someone being
involved in the patent application or an intellectual justification of
its being granted by someone associated with the HGDP, even being at the
founding meeting thereof, does not in itself establish a real connection
between that project and the patent. HOWEVER, such a thing would tend to
make one suspicious that there MIGHT be a connection, and to do further
investigation to determine whether there in fact is one. So I think it
would be interesting to know if there is solid and substantial evidence
that links HGDP with the patent application, and it would also be of some
interest to hear what Dr. Greely (or anyone else who is associated with
the HGDP) might have to say about the claims made by RAFI concerning the
association of Friedlaender with both the Project and the patent.
For what it's worth, I have just received a message from a friend who is
a biology professor, responding to one of the points made in a recent
response to the RAFI press release (made by Lawrence G. Leichtman, M.D.
(LawrenceGL@aol.com, leichtman@picard.evms.edu) Tue, 10 Oct 1995), in
which he (Dr. Leichtman, that is) said:
| I'm disappointed in this press release in that they mentioned nothing
| about how the sample was obtained. Obviously they did not patent a whole
| human; we don't currently know all of the sequences in any one human much
| less multiple people. This smacks of mere anti-science with no sense of
| what the genome project is about. I'm also opposed to patenting of
| sequences human or animal but the reality is that the federal courts have
| so far backed up the companies and the NIH. A little better information
| from the RAFI would have been useful.
My friend's comment was:
r| I agree, except if the entire cell line is patented, then it seems the
r| entire genome (all sequences) would be covered by the patent - even if
r| not currently analyzed or wanted.
which is a point in favor of those who are alarmed by the implications of
permitting such patents to be issued on the grounds that it really does,
in some important sense, amount to patenting the overall genetic material
of a person when combined that the understanding that each body cell in
any animal contains all of the genetic information that defines the over-
all material essence of that animal.
However, after looking at what Henry Greely wrote on this subject:
> The patent is, thus, on the infected cell-line
> ...No claim is made on any human genetic material.
> ...Patenting human genetic information raises troubling issues. Neither
> happened in this case.
she added:
r| ...this seems to cast doubt on my last statement, and I don't see how
r| these statements are consistent... if the cell line is patented, is not
r| the genetic material?? I'd ask Dr. Greely to please clarify this - it
r| shouldn't be too complicated for a layman to understand, if there really
r| is a distinction as he says...
To Edward Hammond, who writes in his most recent article on this subject
(Mon, 23 Oct 1995 22:40:33 GMT):
| I hope that we can now put aside the question of the veracity of RAFI's
| interpretation of the patent claims and move on to the more important
| issues regarding biopiracy and indigenous people.
I would also like to move on to a consideration of these issues, but I
continue to feel that points made by Dr. Greely in his recent article
deserve response. Either there is or there is not sufficient basis to
link the HGDP with the patent claims. If there is, we deserve to see
the evidence and to have it examined and responded to by those who would
defend the reputation of the Project. If there is not, it seems that
the claim of a link (which is different from a *possible* link) should
be retracted. There is still plenty of basis for being alarmed by what
HGDP represents, perhaps (as I indicated above, based on Debra Harry's
article), but that's a very different matter from the HGDP profiting
or otherwise benefiting directly from the patenting of the Hagahai genetic
material or being involved with the patent in some other direct fashion,
as seems to be suggested by the RAFI press release.
Finally, I received a response to the note I attached to one of the articles
posted in this thread in which I said:
| My only question for now is whether there is any such thing as the Human
| Genome Project. I had assumed that this reference (which was not in the
| posting from Lawrence G. Leichtman, but rather from that of Jeff Keohane
| (Tue, 10 Oct 1995 03:40:22 GMT)) was an error, and that Jeff had intended
| to refer to the Human Genetics *Diversity* Project. If there is indeed a
| separate project with a similar name, I hope that Edward or someone else
| can enlighten us on that matter.
The response said:
r| The aims of the HGP, in simple terms, are:
r|
r| 1. Sequence the DNA base pairs of a normal human genome (the letters
r| of the DNA alphabet) and
r| 2. (MUCH, MUCH HARDER!) Identify the genes, the functional units those
r| letters make up.
r|
r| The underlying goals are to save [researchers] the trouble of
r| starting over from ground zero on every project. Instead of wondering
r| "where is this gene?" and "what is the sequence", a researcher will
r| *hopefully* be able to look up an index of genes on the computer and
r| say, "Gene MVM-4333 is known to be right here, with this sequence, so
r| what does it do?" Knowing the position and the sequence in advance
r| makes work easier and faster by letting you know what tools to use in
r| characterizing the operation of a given genetic unit and what tools
r| will only make things worse. The structure/sequence/position
r| information also has a great deal to contribute to other projects,
r| such as the study of the little known (to the general public) role of
r| the "letters" of the DNA "book" to change the real-world shape &
r| physical properties of the "book" itself...
I offer my thanks for this explanation, which make it clear that there
*is* a HGP, which is quite distinct from HGDP.
Well, this is all the time I can afford to put into this subject for the
time being and for the forseeable future, since I'm preparing for an
important conference where I'll be speaking about NativeNet and about the
potential for Internet-based electronic communications to work for the
benefit of Native peoples. I expect to limit my involvement in this
debate in the near future to offering simple comments when they seem to
be warranted. However, I did want to try to identify my own stake in the
matter and to explain that I see my interest here being mainly to see
that the debate proceed in as logical and respectful fashion as possible.
Again, I invite the participation of anyone who has anything to add to
this debate - but if you want to express a personal opinion, please use
the NATCHAT mailing list (natchat@gnosys.svle.ma.us). I'd also like to
suggest that it would be useful to compile a reading list to get a better
understanding of the real issues in this debate. If anyone out there has
recommendations for material that might provide useful background material
or help us understand whatever debates there might be taking place in the
scientific, medical ethics, or public policy literature, please post them
as a followup to this or any article in the current article thread.
Thanks.
Gary
--
Gary S. Trujillo gst@gnosys.svle.ma.us
Somerville, Massachusetts {wjh12,bu.edu,spdcc,cdp}!gnosys!gst