A US National Research Council (NRC) report released October 21 has unambiguously rebuffed the controversy-plagued Human Genome Diversity Project (HGDP), a project that proposed to collect DNA samples from over 700 groups of people - mostly indigenous communities - from around the world. The HGDP's survival is now definitely in question" says RAFI's Executive Director Pat Mooney, "if it's not a spent force, it is certainly marginalized in the scientific community and in very deep difficulty." According to the prominent NRC committee of ethicists, scientists, and lawyers, a global survey of human genetic diversity is merited; but the HGDP proposal is both ethically and scientifically inadequate. According to the NRC committee: "Following an exhaustive examination, the committee found the [HGDP] proposal does not clearly explain the purpose of the project or provide the necessary safeguards for protecting participants."
"We welcome the official rejection of the HGDP," says Jannie Lasimbang of Sabah, Malaysia and President of the Asian Indigenous Peoples' Pact, "especially considering HGDP never seriously consulted and worked with the subjects of the proposed project and never fully addressed concerns raised by dozens of indigenous peoples' organizations across the world." Mooney concurs "Many of the NRC's most important findings echo positions indigenous people, RAFI, and other NGOs have maintained for years; but which were dismissed by the HGDP." "But now, on many important points," says Edward Hammond of RAFI "the NRC is backing us up."
Since 1993, RAFI has publicly maintained the HGDP is ethically flawed and has displayed "fundamental failures in comprehending the socio-political environment in which the Project must perform." Many of the NRC's findings echo the concerns RAFI's Research Director, Hope Shand, made in testimony before the committee in September, 1996.. As recently as April, 1997 RAFI wrote to scientists associated with the HGDP urging that the HGDP disband in light of its consistent failure to respond adequately to the concerns of indigenous peoples, and because the HGDP was impeding dialogue on the broader goal of protecting human diversity. The NRC concurred; it found the HGDP's proposal so lacking that the project was disregarded in favor of taking a fresh look at the merit of research on human genetic differences.
"NSF, NIH, and other potential funders of human genetic diversity research need to pay close attention to the committee's findings," Mooney says, "If heeded, they may clear the way to begin serious dialogue about ethically sound possibilities of protecting human genetic diversity which avoid the HGDP's numerous failures."
Indigenous people say the design and implementation of a survey of human genetic diversity must include their full participation. And, according to Leonor Zalabata Torres, an Arhuaco indigenous person from Colombia, "that means indigenous peoples' control over samples after collection and full protection from patents claims on our tissues" "There should be no military access to the samples under any circumstances," says RAFI's Hammond. In the past year the World Medical Association has expressed concern about the potential development of genetically-targeted weapons and the US Department of Defense has begun to discuss population-targeted biotech weapons in future combat scenarios.
The NRC recommends that if a diversity study goes forward it should be intergovernmentally controlled and that the US Government "should initiate discussions with the international agencies that may govern a global survey." says Shand, "Since 1993 we have consistently maintained that if any global study of human diversity was to be undertaken, it must be conducted under the umbrella of an intergovernmental organization and with the full informed consent and participation of indigenous people." Shand points out HGDP consistently refused to submit itself to UN supervision.
The NRC report isn't all good news. "The diagnosis on the HGDP is good" says Mooney "but the prescription for an alternative survey can only be developed and implemented in full collaboration and with the approval of research subjects." The NRC says that a survey must be UN-managed, current ethical guidelines are inadequate, sample and information distribution pose problems, and patenting is problematic; but then recommends limited funding for diversity collection.
"The NRC clearly shows it is inappropriate to begin; but then, perhaps in a move to please overeager government funders, recommends money should be spent on a non-HGDP diversity study." says Shand, "That would result in a piecemeal approach that is inconsistent with the NRC's call for a complete research protocol - which would require UN-supervision and research subjects approval - to be in place before consent procedures, much less collection, can start.."
There are areas of the NRC report that need clarification. For instance the NRC recommends funding for "projects originating in the US" without clearly indicating the geographic scope of potential sampling. Hammond asks "Will the US government, which has patented indigenous peoples' cells, use that ambiguous phrase to bypass the NRC conclusions about UN supervision and Human Rights and collect globally?" "The suggestion to sample immigrants in the US is disturbing" says RAFI's Jean Christie, "is the US government going to fund the DNA-mining of people who immigrate to that country? Will the US ask for both a green card and a gene card?"
Notably, the NRC recognizes and draws attention to the problems that patents cause for research on human genetic diversity. Echoing years of statements by indigenous people and NGOs, the NRC concludes "much or most of the international controversy over collecting genes to study human genetic variation would disappear if the patenting of genes and gene sequences were outlawed." "Patents aren't the only problem but they're on the right track" says Shand, "Though the NRC cops-out on the logical conclusion that there should be no patents allowed on materials a human diversity survey collects, indigenous people and NGOs do not.." "We've said it before and we'll say it again," says Abadio Green Stocel, who testified before the committee and is the president of the National Indigenous Peoples' Organization of Colombia, "no patents, period."
"In short," Mooney summarizes "in light of the committee's conclusions on ethics and Human Rights, there is no way that collections can go ahead now." "It is amply clear that collections would be premature," says Alejandro Argumedo of Indigenous Peoples' Biodiversity Network (IPBN) "Let's get it straight: First we need to see if a project that meets the approval of research subjects can be designed. Then - and only then - can a discussion of funding collections start.."
In the meantime, indigenous peoples organizations worldwide have called for a global moratorium on the collection of human DNA samples. RAFI supports the moratorium.