More on gene patenting

Wed, 25 Oct 1995 11:54:18 -0600, MDT
J B Owens (OWENJACK@FS.isu.edu)

Forwarded by: Jack Owens <owenjack@isu.edu>, who protests that he
really knows nothing about this subject but finds the debate
interesting from a world systems perspective :-)

------- Forwarded Message Follows -------
Date: Wed, 25 Oct 1995 10:34:46 -0700
Reply-to: H-NET List for World History <H-WORLD@MSU.EDU>
From: Ken Pomeranz <kpomeran@benfranklin.hnet.uci.edu>
Subject: More on gene patenting

From: Mike Lieber, University of Illinois, Chicago (mdlieber@uic.edu)
(Cross-post from ACADEMY)

Many of the principals involved in the current flap about patenting DNA have
now weighed in on various nets. I have also communicated with Ed Hammond at
RAFI and have obtained an online copy of the patent, which I'll be happy to
send to anyone that wants it. I would like to do two things. First, I'll
present the facts of this case as I understand them. Second, I will present
my own analysis of what the original post by RAFI was about and what this all
has to do with the Human Genome Diversity Project.

Rafi's statement that the US government had patented a human being was absurd
on its face. That was an attention grabber. The statement that the NIH pat-
ent included "unmodified DNA" is also false. All of the DNA material that
constituted items in the patent were cloned DNA strands, most of them from the
virus, HTLV-1. This is a virus that is responsible for lymphomas and leuke-
mia, and the Melanesian variant is used for comparison with the Japanese vari-
ant of the virus. The main subject of the patent is a line of human T-cells,
a white cell to which the virus attaches itself. In order to reproduce the
virus, the T-cell has to be cloned. A good deal of the other cloned DNA
included in the patent is part of materials used to recognize the presence of
the virus, several diagnostic kits for lab use. I'm trying to keep this sim-
ple, but if anyone wants more detailed information, I can provide it. My file
on this is pretty large.

Why NIH decided to go ahead with this patent after wavering on it and deciding
not to continue with two other patents (one of which was for the same materi-
als from a Solomon Islander) is an interesting question. Johnathan Friedlan-
der, whom RAFI implied had misled the Solomon Island ambassador to the UN
about NIH's intentions on patenting, has statedthat NIH wanted to discontinue
the patent application process. People at the Institute for Medical Research
in Port Moresby insisted that NIH proceed with the patent on the Hagahai
material, feeling that this was their best chance of assuring that needed
research on the virus would actually get done. It was Carol Jenkins, the
anthropologist working with the Hagahai, that negotiated the agreement with
NIH giving half of any royalties the patent might bring to the Hagahai people.
This patent is the result of work done by the IMR with the cooperation of NIH.
It had nothing to do with the Human Genome Diversity Project from the outset
and still has nothing to do with the HGDP. NIH and IMR are governmetal enti-
ties. The HGDP is not a governmental entity, nor is it supported by or behol-
den to any government. The HGDP has nothing to do with patents, and has no
plans for patenting anything they find, mostly because nothing that HGDP works
with has anything of commercial value worth patenting (unless you think that
start and stop messages on genes is worth big bucks).

These are the bare facts of the matter, and unless you're into patent law and
diagnostic tests using DNA markers for detecting the presence of a virus,
they're pretty boring. More interesting are the ethical considerations of
patenting any form of DNA, but those considerations have gotten lost in lies,
half-truths, innuendo, and hype.

Aside from the obvious falsehoods, the RAFI press release is most notable for
its several cute tricks. Aside from a partial quote of Ron Brown, the only
other people quoted in the release are RAFI personnel. The cell line that was
actually patented is mentioned only in passing, but the reader is never told
what sort of cell line it is. The name of Carlton Gadjusek and the fact that
he is a Nobel laureate is listed as "heading the team" that worked on the

patent, although his name is not listed in the patent. As one reads the rest
of the release, it is clear that Gadjusek's name is not used gratuitously--one
is supposed to conclude from this that US government conspiracies include and
involve the most distinguished of the scientific establishment. This is a
ploy with its own barnacled lineage, used during the McCarthy witch hunt days
which, I regret to say, I am old enough to remember vividly. Johnathan Fried-
lander's name is used in the same way. The first mention of Friedlander in
the release is in connection with a letter that he sent to the UN ambassador
from the Solomon Islands in 1993 (actually 1994) stating that NIH had no
intentions of pursuing the "patents." Now, RAFI does not come out and accuse
Friedlander of deliberately misleading the ambassador. This is because RAFI
already knew that Friedlander conveyed to the ambassador what people at NIH
had told him. But the reader is invited to conclude that Friedlander lied,
since the details of that incident at that time are left out. Having set up
Friedlander as a co-conspirator with the likes of Gadjusek, the RAFI release
uses Friedlander later on as a member of the HGDP planning group. Labelling
the HGDP as the "Vampire Project," the release is able to connect the patent
case with HGDP through Friedlander. This is another McCarthyite tactic, a
particular favorite of people like Roy Cohn.

The real and obvious target of the press release is the Human Genome Diversity
Project, for which the personnel of the NIH patent "group" are portrayed as
pimps. If the NIH patent can be depicted as patenting of human genes, then
RAFI can claim that as clear precedent for what is surely to follow if the
HGDP goes forward. This is why the cell line that actually was patented is
downplayed and the allegation of "unmodified DNA" made.

There has been a good deal of opposition to the HGDP since its plans were
announced. Some of that opposition is based on misunderstanding of the goals
and procedures of the project, owing partly to the political naivete of the
project staff in publicizing it. Much of the opposition, however, has to do
with larger concerns of indigenous peoples and many organizations that are
linked with them in complex ways. They are sick of being targets of projects,
pawns in political maneuvering, objects of study, and providers of resources
that make governments and corporations rich (and give assistant professors
tenure). Set in that context, the HGDP is just one more contribution to a
"better" world by people who get nothing tangible in return. They have seen
it all before and are ready to believe anything about the newest program to
which they are asked to contribute. That NIH is a US government agency while
HGDP is an international organization is a distinction that makes more differ-
ence to us institutional types than to the organizations of indigenous peo-
ples. What difference does it make which agency is peddling which program?
And I must admit that a government that could devise and conduct and cover up
the Tuskeegee Project is capable of anything. I suspect that the intended
audience for RAFI's press release was not us academic or scientific types but
rather the many groups of activists involved with indigenous people's politi-
cal movements and intellectual property rights. While undertsandable as a PR
strategy, RAFI's tactics have a very unfortunate side effect.

RAFI and other politically active groups struggling for the rights of indige-
nous peoples in a world of power politics are not the only people who are con-
cerned with issues of patenting of human genetic material, corporate exploita-
tion of the resources of indigenous peoples, and the many ethical issues in
the study of the human genome. These groups have natural allies in the
world's universities, in the scientific community, and even within govern-
ments, US and others. [The major opposition to the NIH patent came from
inside NIH, and the people opposed to patenting were successful in getting two
out of three proposed patents dropped.] The RAFI press release is nearly per-
fectly designed to alienate natural allies from one another--activist groups
who are prepared to take RAFI's charicature as fact and academicians who are
turned off by the transparent dishonesty and witch hunt tactics of the
release. In one sense, the release is part of a common sort of struggle that
characterizes almost every issue involving public policy ranging from corpo-
rate exploitation to public aid to teen pregnancy: that of WHO OWNS THE
PROBLEM. This kind of struggle almost always creates a polemical frame for
considering any issue.

Academicians and scientists outside the academy are at a particular disadvan-
tage in this context. In an issue that involves complex connections between
problems at several levels of organizational context, we function best in a
non-polemical framework where we can make the complexity clear. It takes time
and patience, clearly a disadvantage for those who want to make a decision
yesterday. A polemic commonly has a binary organization that collapses dif-
ferent levels of complexity down to two opposed charicatures. To argue in
that context is to accept the frame. We don't do are jobs very well in that
kind of context.

The patenting of human genetic material is a serious issue that requires more
than governmental agency policies, which can change with different administra-
tions. National and international law are ambiguous on this issue, and it is
a decision of law, not of policy that is required. There are now private cor-
porations working on patents of human genetic materials--the HGDP is not one
of them; Human Genome Sciences, Inc. is. They will continue to do so unless
prohibited by law or by another group like HGDP making the same information
public property before HGSI can get their patents. Should there be such a law
prohibiting any and all patents on human genetic material? On some kinds of
genetic material? What? Does the HGDP deserve our support? Is the issue of
patents such as the NIH patent one of patenting genes or patenting intellec-
tual property? If the latter, then what constitutes intellectual property?
Is the position of the Department of Commerce that the source of the subject
of the patent is irrelevant to the patent process a legal position that Ameri-
can citizens consider conscionable? Why was there such strong opposition
inside NIH to the HTLV-1 patents? These are questions of moral, ethical, and
practical import for public policy. They need to be discussed to the point of
clarifying the issues involved and the ramifications of any decisions on these
issues. But the decisions still have to be made. I feel very uncomfortable
leaving these kinds of decisions to the likes of RAFI or Ron Brown.

Finally, a local note to this long post. What sorts of allies can political
activists expect from the academy, and what do they (we) have to offer? As a
faculty member of the University of Illinois at Chicago, I can suggest at least
the following. What we have to offer is the capability of producing and
communicating information quickly, the prestige and support of our institutions
and our networks of contacts. My insttution offers even more. UIC, through
its Great Cities program and through the Neighborhoods Initiative, has
committed itself to precisely the kinds of collaborations that generate
resources for community organizations and knowledge for the university. It is
an experiment, long overdue, but one that has begun to show results as both
university personnel and local activist organizations learn to be partners.
We are not the only university so involved. As university personnel learn
what these sorts of partnerships mean and how they work, we become a more
experienced, hence useful resource. This the time for partnering, not for
alienating.
Mike Lieber