First, I have not expressed, and do not even have a position on the matter
under dispute; I am attempting to gather enough information and expert inter-
pretation that might permit me to have an informed opinion. I certainly did
not mean to imply that I am not concerned about what is represented by the
attempt to patent human genetic material, in any event. I'd like to offer
in the present article some reasons for concern, along the lines of what is
suggested about the Human Genome Diversity Project (HGDP) presented in the
material that the Rural Advancement Foundation International (RAFI) has
made available via its home page on the World Wide Web (accessable via the
URL "http://www.charm.net/~rafi/rafihome.html"). My disagreement is not
with the concerns RAFI voices about the HGDP - rather I have a problem
with the way those concerns are expressed in the statement attributed to
Edward Hammond in the RAFI press release posted to NATIVE-L on 5 October.
The main point behind the prefatory remarks I attached to the articles from
Aroha Mead was to point out that it seems to me that Edward has not tried
to justify the remark attributed to him in the RAFI press release:
| "The thin veneer of the HGDP as an academic, non-commercial exercise has
| been shattered by the US government patenting an indigenous person from
| Papua New Guinea," said Edward Hammond, Program Officer with RAFI-USA in
| North Carolina.
or even to explain what he meant by it after Prof. Greely challenged the
statement on the grounds that the HGDP had nothing to do with the patent
of a cell line derived from organic material from a Hagahai man in Papua
New Guinea.
The press release, in my view, does not explain the meaning of the remark
or the basis upon which it is made. Prof. Greely seems, in my mind, justi-
fied in assuming that the logic behind the remark is, as he states in his
subsequent articles, that an attempt is being made to associate the HGDP
with the patent due to that project having been and hoping to remain funded
by the U.S. government, one of whose agencies (the National Institutes of
Health) is seemingly involved in the patent.
A careful reading of the press release, however, reveals that there is
really no explicit justification offered for the remark. The heading
under which it appears simply asks the question "Linked to the 'Vampire
Project?'" The HGDP is described as aiming "to draw blood and tissue
samples from as many indigenous groups in the world as possible," but it
doesn't say that the Project intends to patent or to make available for
patenting any of the material it wants to collect as part of its activity.
There is really no basis offered in the press release that I can find that
suggests a reason for suspecting a linkage between the PNG patent and the
activities of the HGDP.
In personal correspondence with myself, Edward Hammond has stated that "RAFI
never alleged that HGDP, as an institution, was involved in the patent."
Therefore, I assume that the "thin veneer" remark has some other basis not
mentioned in the press release. It seems regretable that Edward has not
made this admission publicly, since it would seem to have saved a lot of
trouble on the part of Prof. Greely and Dr. Friedlander (of the National
Science Foundation, who has posted a couple of articles in this thread) in
attempting to establish that there is no evidence to link the HGDP and the
PNG patent (or any other patent of cell lines, for that matter). It would
seem helpful if Edward could explain his remark (quoted above), which to my
ears carries a very harsh tone and the clear implication that the HGDP has
been masquerading as something it is not.
Prof Greely stated in his article posted to NATIVE-L on 20 October:
| As a member of the North American Committee of the Human Genome Diversity
| Program, I share RAFI's concern about the patenting of a cell-line derived
| from a member of the Hagahai population, or from anyone else, indigenous
| or non-indigenous, who may not have given fully informed consent to such
| use of his tissues or who may otherwise have been treated unfairly. But I
| am also concerned that the Human Genome Diversity Project not be treated
| unfairly by RAFI. Its press release contained such a host of misrepresen-
| tations and outright lies about that Project that I am compelled to respond.
and he went on to defend the HGDP from what he took to be charges that that
project was being accused of being involved in the PNG patent case or that
it was involved elsewhere in patenting of similar materials. Prof. Greely
says further: "RAFI says it opposes "bio-piracy," the theft of valuable
genetic information from indigenous populations. So does the HGD Project.
The Project, in fact, sees its open, international, non-commercial and
non-governmental structure as a solution to bio-piracy."
As I see things, Greely and Friedlaender's main concern has been to defend
the HGDP against what they regard as spurious charges, which they, quite
understandably, in my mind, interpreted as being based on a claim of there
being a relationship between that project and the patenting of genetic
material. Since, as Greely and Friedlander have expressed the matter, the
HGDP does not engage or intend to engage in the patenting of genetic
material, I can understand why they may have felt no reason for them to be
drawn into a discussion of that subject in this forum.
It seems that Edward could have simply responded in public that he never
meant to implicate the HGDP in the business of patenting and thus served
to help create an atmosphere in which we all might get on to what he quite
correctly identifies as being the more important matter of how we can all
work together to oppose any attempts to patent genetic material. From the
statement above, the HGDP would seem to join with him in this opposition.
As an example of the kind of important information contained in the RAFI
material that can be obtained from their Web page, I'd like to quote from
the document available as "http://www.charm.net/~rafi/19941.html":
| Patenting the Human Cell Lines of Indigenous Peoples
|
| In May 1993, RAFI's Communique' "Patents, Indigenous People and Human
| Genetic Diversity" sounded an alarm, based on trends in life patenting,
| about potential abuses and commercialization of human genetic material. It
| described the Human Genome Diversity Project's (HGDP) proposal to collect
| and "immortalize" human tissue from 722 human populations, including many
| indigenous peoples from around the world. RAFI immediately notified the
| World Council of Indigenous Peoples (WCIP), the First International
| Conference on the Intellectual and Cultural Property Rights of Indigenous
| Peoples, and other indigenous organizations about these concerns.
|
| In June 1993, the WCIP and RAFI raised questions about the HGDP at the
| United Nations Human Rights Conference in Vienna, and called for its halt
| until concerns about human patenting and other ethical considerations had
| been satisfactorily addressed by indigenous people.
|
| As if to confirm our worst fears, RAFI discovered in August, while
| researching data from the American Type Culture Collection (ATCC), that
| the US Government had applied for US and world patents on the cell line of
| a 26-year old Guaymi Indian woman from Panama (W0 9208784).
|
| We contacted the Guaymi General Congress in Panama City to inform them of
| these claims, and met with them in September. In letters to relevant
| authorities, the Guaymi demanded that the US government withdraw its
| patent claims, and that the ATCC return the woman's cell line to Panama.
| RAFI worked with the Guaymi General Congress, the WCIP, the World Council
| of Churches, and a growing list of organizations worldwide, to oppose the
| Guaymi patent claim and all human patenting.
|
| In early October, RAFI accompanied the Guaymi president and a colleague to
| Geneva, to protest the US Guaymi patent claim at the inter-governmental
| meeting on the Biodiversity Convention, and at the GATT Secretariat. Press
| statements were made in North America and Europe. The President of the
| Guaymi General Congress, Isidro Acosta, and Jean Christie of RAFI met with
| the GATT TRIPS Secretariat and determined that human genetic material is
| not excluded from the GATT agreement.
|
| Later in October, the European Greens introduced an emergency resolution
| into the European Parliament. It opposed the world and US patent claims,
| requested data on human patenting in Europe, called for a common European
| position against human patenting, and urged a halt to the Human Genome
| Diversity Project. Under mounting pressure, the U.S. government withdrew
| its claim in early November.
|
| I never imagined people would patent plants and animals. It's
| fundamentally immoral, contrary to the Guaymi view of nature, and our
| place in it. To patent human material... to take human DNA and patent its
| products... that violates the integrity of life itself, and our deepest
| sense of morality. (23)
|
| - Isidro Acosta, President, Guaymi General Congress
|
| But the case is not closed, and the issue is far from being resolved. The
| Guaymi General Congress continues to call for the repatriation of the cell
| line, since there is no guarantee that it will not be used and
| subsequently patented by others, if it remains in the ATCC.
|
| In December, the World Council of Indigenous Peoples invited Henry Greely,
| Law Professor at Stanford University, member of the North American Human
| Genome Diversity committee, and chair of its ethics sub-committee, to
| discuss the HGDP at their Annual Assembly in Guatemala. After four hours
| of heated discussion, the WCIP unanimously adopted a resolution to
| "categorically reject and condemn the HGDP as it applies to our rights,
| lives, and dignity", and to oppose, monitor, and publicize its progress.
The resolution referred to here sounds like a pretty strong statement.
One would assume that there is some good reason for it in the minds of the
people who adopted it on behalf of the indigenous peoples they would claim
to represent. I can't help but wondering whether transcripts or written
summaries of the discussions that took place at this Annual Assembly might
be available.
Since this whole question seems to hinge on the question of whether or not
genetic material is actually being patented in the process of patenting a
"cell line," it would be useful if we could get some authoritative opinion
on that subject. The RAFI document cited above says:
| Human Cell Line: A sample of cells removed from the human body that are
| capable of sustaining continuous, long-term growth in cultures. Cell lines
| are said to be "immortal" because they can continue to live indefinitely
| under artificial conditions (with strict control of temperature, nutrient
| requirements, and sterile conditions). Human cell lines provide an
| inexhaustible supply of DNA (the complete genetic code) of the individual
| from whom they are taken.
But to say that a cell line can provide a supply of DNA does not in itself
imply that a patent granted for a cell line implies a patent on the genetic
material contained therein, whatever common sense would suggest - since it's
fundamentally a legal question - or even that the purpose for patenting such
cell lines has anything to do with obtaining a patent on the DNA contained
therein. At least in the PNG case, it seems more a matter of wanting to
secure rights to the medium in which a certain infection can be cultured
and studied than to gain rights to the genetic material contained in the
medium in order to obtain some commercial benefit from that material itself.
Perhaps in the end the distinction is a subtle one and ends up not to not
really matter - but at least I think such questions have to be asked.
Speaking of legal questions, I'd like to mention that in his article of
22 October, Edward says:
| Patents are supposed to be on new and novel inventions. Where is the
| "invention" in patenting an unmodified human cell line that is: 1) a
| product of nature and 2) involves *no* inventive step?
I find in the RAFI document I've been quoting from the statment that:
| It is important to understand the distinction that is made between
| "un-developed" human biological materials and the biological "inventions"
| or commercial products developed from them. So-called "un-developed"
| biological materials (human tissues and cells) may be considered
| biological "inventions" and hence patentable subject matter when they are
| used to produce cell lines, hybridomas, and cloned genes.
Whether the legal opinion that serves as the basis of this definition is
reasonable, fair, or ethical is another subject. However, the idea of a
cell line being a patentable "invention" does seem to fall within the
law's notion of what a cell line is, even if it is achieved by means of
a kind of sleight-of-hand. So I think that the question may not be one
of whether it is *legal* to patent a cell line, since apparently patents
have been granted - rather it's a question of whether the law is fair or
consistent on this point. Maybe that's really what Edward is trying
to say - that the law should be considered to be inconsistent and hence
should be opposed. From what Prof. Greely claims, however, it would seem
that he would be willing to join in opposing such laws were they to be
tested. (Maybe he can clarify this point for us.)
Perhaps the issues involved are too complex to be dealt with adequately
in an electronic discussion, though I would like to at least find a way
to collect what materials are available on the subject to form a kind of
electronic repository that can be of use to anyone wanting to do her/his
own investigations.
I get a sense from what Prof. Greely and Dr. Friedlaender have written,
especially from Dr. Friedlaender's most recent article (31 October), that
there is at least a strong semblance of the intent to cooperate on their
part in investigating with us the dangers and even the possible evils
represented by the patenting of human genetic material:
| I can only hope that more dialogue in a variety of media, most importantly
| on a face to face basis, can at least start to bring us to a place of
| mutual understanding and, let us hope, eventual trust. There are a number
| of real devils who wish to exploit and control others - some of these exist
| in the world of science, and some exist in the world of the heretofore (and
| continuing) exploited. We do have a common interest in exposing those
| people and working to weaken their interests. ("v5065e@vm.temple.edu")
I think it serves our aims better to attempt to cooperate with them if
possible. However, as Aroha indicates in her recent articles, those
attempts may have already been made by the legitimate representatives of
indigenous peoples, so it may not really matter whether or not we can
achieve a rapport in the larger scheme of things, unless (as is my own
hope), we can provide a new basis for the dialogue to proceed. My main
concerns lie in the fact that the people who are most in need of being heard
cannot easily take part in the conversation, and that the technology itself
provides a strong bias in favor of those who feel comfortable with its use.
But it would at least seem worthwhile for us to use the technology to
ourselves get a better understanding of the real issues that need to
be worked on and how we can ourselves best go about doing whatever it
is we each decide most needs to be done. I won't have time myself to
say much more on the subject for a couple of weeks, but I hope that
some of the rest of you will weigh in on it.
Gary
[ I know that I said in my capacity as moderator that personal opinions
should be sent to the NATCHAT list, but maybe it would be best to at
least temporarily withdraw this request and invite you all to say what
you feel about whether there is value in having a discussion about this
subject on the NATIVE-L list, and how you feel about the subject itself. ]
--
Gary S. Trujillo gst@gnosys.svle.ma.us
Somerville, Massachusetts {wjh12,bu.edu,spdcc,cdp}!gnosys!gst