In speaking about a submission whe made to UNESCO (United Nations
Educational Science and Cultural Organization), Ms. Mead writes:
| I would like to think that the submission was effective as Dr. Darryl
| Macer from UNESCO incorporated it into UNESCO's final report.
| Incidentally, UNESCO also turned down the HGDP's proposal for UNESCO to
| become 'international patrons' of the Project. UNESCO stated that there
| were far too many unanswered questions (including the issue of
| commercialisation of research outcomes and 'products'), and noted that
| the overwhelming opposition to the project from indigenous peoples
| worldwide simply could not be ignored.
|
| I note that Greely still takes the view that indigenous opposition is
| based on 'ignorance' and misunderstanding. I met with Greely during his
| recent visit to NZ, and had an opportunity to really talk things through
| with him. I suggested that in taking the view that indigenous
| opposition was based on ignorance and misunderstanding he was in effect
| reinforcing indigenous concerns that the project was based on
| assumptions of western racial superiority - ie that western science
| knows best even if the 'subjects' of that science do not consent, do not
| consider it a priority, and outright reject it because of a fundamental
| difference in world view.
(Gary speaking again):
> From what I have read thus far in the debate between Edward Hammond of
RAFI, Henry Greely of HGDP, and Jonathan Friedlaender of NSF, I have not
been personally persuaded of the claim made by RAFI that the HGDP is in
any way implicated in the attempt to patent genetic material in the case
involving the Hagahai man living in Papua New Guinea based on the evidence
Edward has presented on NATIVE-L (which is not to say that I could not be
persuaded by better evidence and reasoning). It seems to me that Edward
has not answered some important points made by Greely and Friedlaender
regarding the charges made against the HGDP in the RAFI press release
posted on NATIVE-L on 5 October.
As I've said to Edward in personal correspondence, it seems to me that if
an effective case is to be made against the HGDP, it must be on more sub-
stantial grounds than that someone who attended the founding meeting of
the HGDP had something to do with the PNG patent matter, particularly if
that involvement was only that of writing a letter to the ambassador of
the Solomon Islands about what his own research had uncovered was being
done in this matter by NIH. Dr. Friedlaender has no association with NIH,
as was originally claimed in the RAFI press release (a claim later retracted
by RAFI, though they have said something about NIH and NSF working together
closely - which falls far short of demonstrating a real connection in the
matter of this patent case), and his accounting of the matter (NATIVE-L,
27 October, via Henry Greely) has thus far not been challenged.
The matter of whether or not genetic material is actually being patented
in the patenting of a cell line is, in my mind, still uncertain. Prof.
Greely, who claims the expertise of a law professor, states quite
categorically that the patenting of a cell line does not imply patenting
of genetic material _per se_. RAFI has not offered legal evidence thus
far in support of their assertion that it does, but have instead relied on
the commonsense notion that cellular material cannot be patented without
genetic material being patented also. I think we require expert legal
opinion in supporting of RAFI's position before we have good reason to
doubt Prof. Greely's contention in this regard. (Prof. Greely admits that
patent law is not his own specialty, but he says he does know something
about the subject, and that he has been talking to experts in the field,
which Edward Hammond says he also has been doing.)
It is still not at all clear to me what rights are denied to a person or
to a group from whom/which either cellular or genetic material has been
obtained under a consensual agreement as a result of that agreement.
Prof. Greely has stated (NATIVE-L, Wed, 25 Oct 1995 00:35:48 GMT) that:
| A patent is an exclusive right to commercial use of a claimed invention.
| This patent claims as its "invention" the cell-line, viral preparations
| made from the cell-line, and bioassays made from the cell-line. Hammond is
| certainly right that the DNA of one or more members of the Hagahai is
| "part" of this patented "invention" because it is present in the cell-line.
| But the DNA itself is not patented and its use is not restricted in any
| way. The donors involved can continue, obviously, to use their own DNA to
| run their bodies. They could also, if they chose, patent anything they
| wanted to patent that was an "invention" from their DNA. If it turned out
| that a version of a human gene found in this cell line was a cure for
| cancer, this patent gives the U.S. government absolutely no patent or
| intellectual property right in such a gene variant. The Hagahai involved
| can make any use they choose of their DNA or cells EXCEPT to create their
| own cell-lines that are infected with this strain of HTLV-1 and using those
| cell-lines for commercial purposes.
It would be interesting, I think, to hear a well-founded contrary opinion
on this subject, since, at least from a legal point of view, it would seem
to lie at the very heart of the matter.
But there are some important larger issues which I feel that the arguing
about whether HGDP did or did not have any involvement in the attempt to
patent the cell line from material obtained in PNG or discussion of fine
points of patent law may serve mainly to obscure, though it would be of
some substantial interest if we could learn more about those matters.
I feel that the articles which Aroha Mead has written, which originally
appeared on the INDKNOW mailing list, can help us begin to explore these
larger issues, having to do with what constitutes informed consent and
some of the underlying assumptions behind the HGDP. I feel these matters
must be explored carefully, and are more likely to be fruitful avenues in
the matter of determining the overall agenda of that Project and what
safeguards, if any, could protect against the dangers feared by those
indigenous peoples and the organizations which represent them, as detailed
in the text which follows.
I invite anyone who has additional information on this subject or who has
questions which you feel would be worth asking in connection with an
investigation of this subject to post a followup article to NATIVE-L (or
soc.culture.native, alt.native, or indig.info, in the case of people who
access this discussion via Usenet or one of the worldwide APC systems).
Gary
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From: Aroha Mead <aroham@nzonline.ac.nz>
To: indknow@u.washington.edu
Date: Mon, 30 Oct 95 11:31 NZDT
Subject: Re:RAFI/HGDP/ human genetic research
Message-Id: <m0tA2k8-0001Z6C@tpcom.taranaki.ac.nz>
Kia ora,
Some time ago (perhaps 6 weeks) I distributed through INDKNOW a
copy of a submission written by the Mataatua Declaration
Association (on Culturala and Intellectual Property Rights of
Indigenous peoples) to the UNESCO Bioethics Committee. The
Committee met in Paris last month to consider a proposal by the
Human Genome Diversity Project (HGDP) for UNESCO to become the
Project's international 'patrons'. My submission covered the
whole issue of human genetic research, of which the patenting of
human genetic materials was one aspect of a multitude of other
equally relevant considerations. If anyone still has a copy of
that submission on their files, perhaps you could forward it to
NativeNet for me. I deleted my own copy.
It is telling that UNESCO ultimately declined the HGDP proposal
and in so doing, made it clear to the HGDP that there were still
far too many unanswered questions about the motives for their
research, and most importantly, their methodology. UNESCO also
specifically indicated that the HGDP had not satisfactorily
clarified their position on the potential for commercialisation
of their research outcomes, including the likelihood or not of
Patents.
I find it interesting to note the debate occuring now in which
RAFI's opinion and the HGDP's opinion is being scrutinised. There
are two other issues which need to be considered.
First, as far as I am concerned, the opinion that matters most is
that of indigenous peoples themselves - we are the ones who are
the unwilling 'subjects' in this type of research. We have made
it very clear that we oppose human genetic research of this scale
(and we do distinguish the right of indigenous individuals and
families to seek confirmation and treatments for genetic
conditions that they might experience from more generic
racially-based research). Consistent with our opposition to
racially-based human gentic research, we obviously also reject
the patenting of human genetic materials (be they copies or
original specimens). On the issue of patenting, we reject the
use of this legal instrument to assert ownership over any
lifeform (human, plant and animal in their smalles microbial
form) - Patents are simply another tool of colonisation to take
what little indigenous peoples have been able to retain after the
first wave of colonisation.
The second issue, is that I cannot see how scrutinisng RAFI's
statements is going to help the cause. RAFI are very effective
in generating interest in this topic, and in some ways have been
a lone voice. I am indebted to them for raising awareness of the
issues around the globe. That is their forte. Both RAFI and the
HGDP employ whatever means they must to convince others of the
soundness of their research. With this in mind, I do not believe
that going through RAFI's work paragraph by paragraph trying to
question fact from interpretation is of any use at all. With all
due respect to Professor Greely, your time would be better spent
talking to us - that is the world's indigenous peoples.
Inherent in this RAFI/HGDP debate is this whole premise of
western science, in fact western culture, that it is somehow
possible to be OBJECTIVE. That one can divorce themselves from
all that they are, their family background, cultural bakground,
political views, etc. etc. and give an 'objective' analysis of
the very knowledge that they guard and value so passionately.
This has also created problems for indigenous peoples - we are
acutely aware that our world view is subjective - and it is so
obvious to us that the same holds true for everyone else as well.
Human genetic research is not an issue of interpretation of facts
- rather it is an interpretation of differing world views on the
sanctity of life and appropriate science.
Incidentally, here in the South Pacific we have developed a
TREATY FOR A LIFEFORMS PATENT-FREE PACIFIC AND RELATED PROTOCOLS.
The two protocols relate to bioprospecting in the Pacific, and
to human genetic research.) Send me your address if you would
like to receive a copy - would prefer to send it to organisations
prepared to sign it!
Aroha Te Pareake Mead
P.O. Box 13-177
Johnsonville, Wellington
AOTEAROA NEW ZEALAND
Tel:Fax: +64-4-479-7781
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From: Aroha Mead <aroham@nzonline.ac.nz>
Date: Sat, 29 Jul 95 19:58 NZST
Subject: UNESCO-Bioethics & Human Population Research
Message-Id: <m0scTG6-0001qrC@tpcom.taranaki.ac.nz>
INTERNATIONAL ASSOCIATION OF THE MATAATUA DECLARATION
P.O. Box 13-177, Johnsonville, Wellington
AOTEAROA NEW ZEALAND
29 July 1995
Dr. Darrell Macer
Sub-Committee on Population Genetics
UNESCO International Bioethics Committee
PARIS, FRANCE
(E/Mail: Macer c/o benbasat@bgumail.bgu.ac.il OR
Macer@sakaura.cc.tsukuba.ac.jp)
Tena koe Dr. Macer,
Thank you for sending me the revised Draft Report of 17 July 1995
entitled BIOETHICS AND HUMAN POPULATION GENETICS RESEARCH,
prepared for the UNESCO International Bioethics Committee Third
Session 1995, and for the invitation to comment on the Report.
The International Association of the Mataatua Declaration (on the
Cultural and Intellectual Property Rights of Indigenous Peoples)
wishes to offer the following comments.
You have already received a copy of a paper entitled GENES AND
GENEOLOGY (WHAKAPAPA): THE INTEGRITY OF THE HUMAN GENE. This
paper was given recently to a NZ Health Research Council Consensus
Workshop, entitled WHOSE GENES ARE THEY ANYWAY? THE USE AND MISUSE
OF GENETIC INFORMATION. This paper presents a Maori indigenous
analysis of the nature and meaning of DNA and human genetic
materials. It also attempts to list the meetings and sentiments
of both indigenous and non-indigenous conferences held worldwide
discussing the Human Genome Diversity Project (HGDP). Professor
Henry Greely of the North American Committee of the Human Genome
Diversity Project was also a keynote speaker at the same
Conference.
After the benefit of discussion with Professor Greely, which
representatives of Maori tribes as well as Pacific Island
governments attended, I would like to outline in more detail the
basis of Maori and many other indigenous peoples' concerns
regarding the specific objectives of the HGDP.
1. THE INTEGRITY OF THE HUMAN GENE
The most fundamental point which needs to be considered is the
indigenous view of what a human gene is, what and who it
represents, what and for whom its purpose is determined, and who
is considered the 'owner or guardian' of human genes.
For Maori, and many others, the human gene is geneology. Maori
have two words to describe the human gene, both of which are
interlayed with a broader reality than western scientific
definitions. IRATANGATA which is the actual word for 'a gene'
translates as 'life spirit of mortals' - the more common word is
WHAKAPAPA which means 'geneology' and is the basis for Maori
connecting with themselves and others.
A 'physical gene' is imbued with a life spirit handed down from
the ancestors, contributed to by each successive generation and
passed on to future generations. A gene and combinations of
genes, genome are NOT the property of individuals - they are part
of the heritage of families, communities, tribes and entire
indigenous nations.
It is difficult to articulate the degree to which indigenous and
western scientific philosophies differ on such a fundamental
point, but for the purposes of this excercise, I wish to
emphasise that it is the difference in understanding of the
origin of humanity, the responsibility of individuals and the
safety of future generations which sits so firmly at the core of
indigenous opposition to the HGDP.
It is important to stress this point, as I understand that many
in the HGDP, and perhaps in UNESCO, have the mistaken view that
the reason for indigenous opposition to the HGDP rests in lack of
understanding of the Project's aspirations, and confusion over
minor details such as 'a list or targetted communities' or 'use
of information for military purposes'. The fundamental reason is
that according to an indigenous world view - this type of
research proposes to interfere in a highly sacred domain of
indigenous history, survival and commitment to future
generations.
2. INFORMED CONSENT
While Professor Greely was here in Aotearoa NZ we spent a
considerable amount of time discussing this illusive concept of
'informed consent'. The more we discussed it, the more ephimeral
it became. What is informed consent? A population of 500,000 or
even a population of 3,000 - how does one acheive the 'informed'
consent of populations/communities? Every single person or
individual? If one looks to established indigenous structures,
who does one go to? A Church Minister? A government-organised
tribal committee? A tribal committee tasked with economic
development but with no mandate for ethical issues? A government
department (say in the case of Pacific Island States?) Who within
a community can possibly give their consent for research, or
activity that implicates everyone? As for 'informed', that
presupposes that the state of being informed can be reached
relatively quickly. I've been working at a community level for
over 20 years, and I would say that out of a group of 50, perhaps
10 will demonstrate an interest in an issue, and of those 10
about 4 will seek enough information to be 'informed'.
That process can take from 6 months to 5 or 6 years.
A representative from the Cook Islands gave a very real example
to Henry Greely. She said, that Church Ministers have become
(post-colonisation) 'leaders'. A single Minister can approve or
reject any activity on behalf of their parish of over 7000
people. Such is the respect of Cook Islanders of their
Ministers, that they would not protest against a Minister's
actions. But as she said, if a Minister did agree to the HGDP
it would cause very real pain, hurt, tears, sleepless nights and
questioning of self-esteem of Cook Island community people.
This same person (Jean Mataira, Ministry of Pacific Island
Affairs, NZ) talked about the naivete and trusting nature of
Pacific Island peoples. She mentioned how it took her only 10
minutes to obtain clearance for a group of 5 international
anthropologists to enter the Cook Islands. She said that no
constraints, no requirement to report on outcomes, was ever
discussed.
I wish to stress, that the HGDP and other similar-type activities
can serve to divide, and cause irreparable damage to the ability
of indigenous communities to trust each other, let alone to trust
others. Nowhere, in the HGDP literature, or in the UNESCO draft
documents, have I ever sighted acknowledgement of the extent and
effects of the first wave of colonisation - of the energies being
expended now just to encourage indigenous peoples to be proud of
who they are, to regain the use of their languages and cultural
and spiritual traditions, nor is there acknowledgement of
indigenous struggles to regain their confiscated lands.
This is not an issue of DNA, it is a very real issue of
colonisation, assimilation, oppression, and human rights abuses.
The UNESCO paper distinguishes in 2.2 the 'Confusion of social
idealogies with scientific goals' but science is only of use if
it improves the quality of life and society. Without that, it
serves no useful purpose to humanity, only a purpose for a
minority exclusive group of western professionals possibly at the
expense of the unity and survival of indigenous communities
struggling to remain intact after a legacy of lies, deceit and
oppression.
UNESCO as an international body, should question the HGDP's
understanding of INFORMED CONSENT. The HGDP should be questioned
on their methodology for obtaining consent. What kind of
conversation with communities will take place? How long will
that process require? How can one distinguish the rate of consent
and/or rejection? If 20 people say yes but 23 people say
no, which group will prevail? Will the process be documented? Who
else will be involved? Will 'observers' be asked to oversee the
process? How convinced are they that they will not contribute to
tribal or community division? What mechanisms are in place to
ensure that the unity of communities are not threatened through
the HGDP process of seeking consent? In Third World countries,
will the HGDP still make the same distinction between 'community'
and 'State'? Have they even thought about the political
distinctions or in pursuit of a 'pure scientific' goal are they
ignoring the social, political, economic, cultural realities?
As far as the IAMD is concerned, there are more questions to be
asked than answers provided. It is difficult to see how UNESCO
as an international body seeking to acheive international
understandings, could agree to a project which still has yet to
demonstrate its objectives (which change considerably year to to
year), its methodology and its ability to make commitments about
future factors.
3. THE ROLE OF GOVERNMENTS
It remains unclear as to the extent of government participation
in the HGDP. Greely confirmed that the HGDP will be seeking
funds from States. How will this effect the status, integrity
and self-determination of indigenous peoples? Many States
actively oppress indigenous communities. What mechanisms are in
place to ensure that States do not use the HGDP to substantiate
biases and objectives of governments to undermine indigenous
self-determination? If the HGDP relies on government funding, it
almost guarantees a bias towards sponsoring governments'
objectives which historically are counter-productive to indigenous
objectives.
4. ACCESS TO COLLECTIONS AND INFORMATION
Current HGDP literature confirms that both collections and
information will be made available for scientific research
through open-access agreements. What mechanisms are in place, to
screen the intentions of researchers? What if they wish to delve
further into THE BELL CURVE nature of analysis? What if a
company accesses public information for private commercial gain?
It seems there are too many unknowns for anyone to feel confident
about the future use of materials and information.
It is also unclear as to whether the HGDP will attempt to access
current collections, thereby rendering their claim of INFORMED
CONSENT redundant.
5. CONCLUSIONS
Indigenous opposition to the HGDP is based on a scientific
difference in the origin of humanity, the nature and purpose of
DNA and human genetic materials, and the responsibility to future
generations. Additional to these primary concerns, with regard to
the particulars of the Human Genome Diversity Project, are
unanswered questions about:
informed consent (whose consent?)
measurement of rejection as well as consent
the role of governments
possibility of commercialisation
ever-changing nature of the objectives of the HGDP
First and foremost is the fact that indigenous peoples have
already eloquently expressed their opposition to the HGDP. What
does it take to convince authorities of the extent of opposition?
IS there a 'magical number'of opposition in which case, what is
it? How can the HGDP or UNESCO measure indigenous rejection or
support? Until these questions are answered, it does not seem
appropriate for a body such as UNESCO to support the HGDP.
This contribution is being copied to a number of organisations
who support the Mataatua Declaration in order for them to lend
support to this paper, and to expand further on issues.
6. RECOMMENDATION
That UNESCO recommend further delineation by the HGDP of
their intent, methodology (particularly as it relates to
informed consent and to the role of governments) and
guarantees of future status of any HGDP DNA collections
and resultant research outcomes, BEFORE UNESCO approval
and patronage can be given.
7. ADDITIONAL SUPPORTING MATERIAL
I am sending by mail three additional papers written by me which
discuss the issues of human genetic research and the broader
issues of indigenous knowledge in more detail.
These papers are:
(1) 'Biculturalism and Cultural
Sensitivity in Human Gene Therapy and Research" Aroha
Mead, extract from the Report and Guidelines of the NZ Health
Research Council Working Party on the Clinical and Research Use
of Human Genes (HRC, 1994);
(2) 'A Maori Viewpoint on Genetic Research and Services' Aroha Mead
from the Report 'Priorities for Genetic Services in NZ, National
Advisory Committee on Core Health and Disability Support
Services, Wellington NZ, ISBN-0-478-10450-2 - July 1995
(3) 'Misappropriation of Indigenous Knowledge',Aroha Mead, Otago
University Bioethics Journal, Vol.3, No.1, February 1994
Aroha Te Pareake Mead
International Association of the Mataatua Declaration
(IAMD),Director
Maori Congress, Foreign Policy Convenor
Ngati Awa Biodiversity Audit, Director
Indigenous Peoples Biodiversity Network, Board Member
Cultural Survival Canada, Board Member
P.O. Box 13-177
Johnsonville, Wellington
AOTEAROA NEW ZEALAND
Tel:Fax: +64-4-479-7781
NOTE; TO SUPPORTERS OF THE MATAATUA DECLARATION - PLEASE ENDORSE
AND EXPAND ON THIS SUBMISSION TO UNESCO BY 7 AUGUST 1995.
DISTRIBUTE AS WIDELY AS POSSIBLE.
--
Gary S. Trujillo gst@gnosys.svle.ma.us
Somerville, Massachusetts {wjh12,bu.edu,spdcc,cdp}!gnosys!gst