RAFI's formal reply to Dr. Greely's post is finally about to be posted. For
those that are carefully following the debate, thanks for your patience -
RAFI is a small organization with a wide geographic spread - even in the
electronic age it takes us a little bit of time to coordinate.
NATIVE-L is not the only place where posts regarding the PNG patent have
been made. Dr. Jonathan Friedlaender, who is mentioned in the initial
press release and Mr. Greely's posts, also has written and distributed a
message about the RAFI press release. RAFI's reply - since it is to be
distributed more widely than NATIVE-L - incorporates references to Dr.
Friedlaender's letter.
I have attached a copy of Dr. Friedlaender's post below, so interested
people have all the relevent documents. As you can see at the outset
of Dr. Friedlaender's note, he has OK'ed wide distribution.
Edward Hammond
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Subject: Re: Patent on DNA of a PNG person
Author: Jonathan Friedlaender <V5065E@VM.TEMPLE.EDU> at NOTE
Date: 10/16/95 10:45 AM
This is a summary (as of this morning) of what I know about the RAFI
charges. As far as I am concered, this can go out to whomever you want to
send it to. I am very upset about this entire flap, primarily as it
concerns the fate of the Institute of Medical Research in Papua New Guinea,
secondarily the progress of the Human Genome Diversity Project, and thirdly
my own reputation. What is not understood to the moment is how outrageous
RAFI has been in spreading what can, most generously, be called gross
distortions about all concerned. And to date no one has been willing to
call them on it. That time has come.
Some background.
1. The IMR, Carol Jenkins, and the Hagahai.
The IMR in Papua New Guinea is an exemplary organization, and the Papua New
Guinea government has been extremely wise to support it. Their staff is
international - meaning Australian, American, African, Indian, and Papua New
Guinean, among others - and they have an outstanding record of biomedical
research achievement and public health education. A few examples include
the identification and cure of a formerly widespread and lethal disease
("pigbel"), very important malaria research, ongoing and important public
health education efforts in nutrition, tuberculosis, AIDS, and ecological
degradation. Their Director, Michael Alpers, recently received a coveted
tropical medicine award and Carol Jenkins, a medical anthropologist with
primary training in cultural anthropology, has received considerable
recognition for her work in a number of areas. She is an international
authority on AIDS epidemiology and education, works extensively for the WHO,
and currently has support from the MacArthur Foundation for her work with
the Hagahai in a remote part of Papua New Guinea. These are the researchers
being attacked as biopirates by RAFI, and who RAFI is threatening to take to
the World Court in the Hague. The Hagahai are a very small population (a
"Fringe Highlands" group) in PNG that were contacted a few years ago by an
IMR expedition with Jenkins involved. It is more correct to say that the
Hagahai contacted the outside world, in despair, since their numbers were
declining rapidly and they sent men to other villages to get western medical
aid to fend off extinction. The IMR has provided various services to them
over the past few years, part of which involved figuring out what diseases,
western and otherwise, they had been exposed to that could be responsible
for their heavy mortality rates (eg. flu, t.b., measles, etc.). In the
course of this, NIH researchers found that some Hagahai were infected with a
viral strain (of HTLV-1) that had not been seen before. A patent application
was filed on this viral variant found in the pooled blood sample from about
20 Hagahai (contrary to RAFI's claim, no one has ever tried to patent a
Hagahai's genes, much less a Solomon Islander).
The Gene Patent Application.
In coordination with the NIH, a patent on the HTLV-1 variant found in the
Hagahai pooled sample was filed (a second, on a related variant found in a
Solomon Islander, was also filed about the same time). This was done at a
time, under NIH Director Healy in the Bush Administration, when there was a
clear policy to patent newly identified gene segments, human and otherwise.
This was a very controversial stance, nationally and internationally, and
caused a number of resignations of scientists who disagreed with the policy,
including James Watson. Geneticists working for the NIH, or with NIH
funding, were obliged to file patent applications as they found them. As
part of the applications, cell lines containing these segments had to be
deposited at the American Type Cultue Center in Rockville, Maryland, and
that while the applications were under review, no one could access those
cell lines. I understand that the patent application specifies that neither
Jenkins, the IMR, nor the government of PNG stand to gain financially from
the patent - but that 50% of any potential profit would go to the Hagahai
themselves. When they heard that some of them had an infection (apparently
benign) that was interesting to western doctors and might be worth
something, and that a legal paper was being drawn up to ensure that they
would share in any profits, they were eager that it go through. Jenkins
signed the document at a meeting of the American Association of Physical
Anthropologists, with witnesses, and with great approbrium for her role.
Parenthetically, people in PNG are very familiar and comfortable with the
idea of residual rights in such things as songs and trees, and general
"compensation." A patent is not some peculiar idea that only westerners can
understand (whether or not it is legitimate in this instance).
The PNG patent case was approved during the past year, with the Hagahai's
strong support, while the related case of the Solomon Islands HTLV-1
application was abandoned in favor of a continuation (equivalent, I'm told,
of putting on the back burner), and,finally,withdrawn by the NIH. A NIH
official said that the reason the PNG case was not withdrawn was because of
the assurance of Jenkins that the Hagahai expressly wished to pursue it.
The Human Genome Diversity Project.
The Human Genome Diversity Project (hereafter HGDP) is a planned (not
functioning) systematic collection of genetic, demographic, anthropological,
and epidemiological information on human populations world-wide, that has
also been subject to vitriolic criticism from RAFI, on the grounds (as best
I can tell) that it represents potential bio-piracy (making money from the
genes of people around the world - also called gene mining and
bio-colonialism); and that the (genetic) information gleaned may be used to
develop insidious tools of genocide. This potential project, along with the
viral DNA patent cases just mentioned, are seen as part of a general (US)
government plot to continue past exploitative/colonial relationships.
The HGDP has been developing a legal/ethical protocol that its members hope
will be adopted if the project gets underway. I have seen drafts, and it
provides extensive protections of people participating in the way of
property rights, preservation of individual anonymity, and a large number of
related issues. I can say that it goes well beyond heretofore common
practice in medical research investigations in such safeguards. There is a
policy of foreswearing any potential financial benefits in any potential
discoveries that might come from the project, and in developing a mechanism
for devolving any such benefits to the participating populations.
My involvement.
I am a Temple University professor of (biological) anthropology, recently
returned from a 3 year stint as Director of the Physical Anthropology
Program at the National Science Foundation (not the NIH, as RAFI has said).
While program director, I supported the development of the HGDP, but was
not (and am not) on an HGDP committee. I have done my own research in PNG
and the Solomon Islands over the past 30 years, and am attempting to resume
that activity after my NSF stint. In September, 1994, as a result of a
conversation with the Solomon Islands Ambassador to the US, UN, and Canada,
who wanted to know about the gene patenting application on a Solomon
Islander, I inquired at the NIH and wrote a letter on its status to the
Ambassador that month (9/94). I said the Solomons case had been abandoned
in favor of a continuation, and that the PNG case was also likely to be
abandoned or not allowed. It was only this past June, when I visited the
IMR in PNG, trying to establish my own collaborative project, that I
discovered that the PNG viral patent case had in fact gone forward at the
urging of the people concerned, as described above. RAFI has now insinuated
that I intentionally misled the Solomons Ambassador.
NIH's gene patent policy
I have had a couple of phone conversations with NIH officials on their
policy on gene and gene fragment patent policy. It is clear that the
confusion and apparent contradiction in this matter is a reflection of
changing NIH policy on this issue, from Director Healy's time to the
present, under Harold Varmus. The NIH now generally discourages DNA patents
(hence, for example, the withdrawal of the Solomons case. This is very
clear in their stance on the patenting of cDNA's.
RAFI's attacks
Members of RAFI have flooded the internet with misrepresentations of the
patent cases mentioned above and have begun attacking the IMR, the HGDP, as
well as the US federal government in a way that is truly irresponsible. I
have not been in direct contact with them, but others have tried to correct
their more serious misrepresentations/misconceptions. They will not listen.
The latest salvo is a threat to take Jenkins to the World Court in the Hague.
The major problem is that this entire situation reflects on the widespread
distrust of the scientific/technological enterprise, and of the willingness of
many to believe the worst of people with scientific knowledge. It also shows
we are too willing to accept the charges of self-proclaimed champions of all
indigenous peoples who,in this instance, are willing to distort facts that
appear, at first, to represent exploitation by powerful international
interests.