Anthropologists and molecular biologists who propose samplingthe world's genetic diversity have shaken some branches of theglobal family tree by holding planning sessions withoutconsulting indigenous peoples who would provide the rawgenetic material for this research.
Rodrigo Contreras, executive assistant of the World Council ofIndigenous Peoples in Ottawa, Ontario, plans to present theproposed Human Genome Diversity Project to indigenousorganizations today at the United Nations Conference on HumanRights in Vienna.
"This is of crucial concern to indigenous peoples who've losttheir territories, their children, their languages and now faceexploitation of their genes," he told BioWorld. "Somebodyalways makes the decisions for them."
However, Stanford University Law School professor HenryGreely, who has coordinated consideration of ethical andhuman rights issues for the half-dozen academicians planningthe proposal, said the proponents are still looking for fundingthat would allow them to attend such conferences to solicitinput. Grants from the National Science Foundation haveallowed the scientists to meet three times regarding samplingstrategies, biological concerns and ethics, he said.
In the final meeting on ethics in February, the scientists,including geneticist Mary-Claire King of the University ofCalifornia at Berkeley, concluded that if commercially viableproducts arise from the basic research, everyone might agreethe genes would not be patented and product royalties wouldgo to the sample populations.
"We are very committed to ethical issues," Greely said. Thecommercial, moral and political concerns in some ways echoconsiderations that have been negotiated over two decadesregarding the collection and use of native seeds around theworld, said Gary Comstock, a professor of philosophy at IowaState University who specializes in agricultural andenvironmental affairs.
People in developing countries should be free to decide forthemselves whether to make raw biological materials, includingtheir genes, available, without being "hoodwinked," he said.
Informed consent and ownership were issues for the potentialbiotechnological product GM-CSF, which stimulates maturationof granulocytes and macrophages. The factor was originallyidentified in cancerous lymph cells within patient John Moore'sdiseased spleen.
The U.S. Supreme Court held in 1990 that Moore did not haveproperty rights to his tissue, which had been turned into aprospective product after surgery that cured his cancer.
Bioethicist Art Caplan of the University of Minnesota Center forBiomedical Ethics said he thinks other nations and cultures willtake a similar stand on the ownership issue.
But directors of the Rural Advancement FoundationInternational (RAFI), a 12-year-old group focused onagricultural development issues, point out that there is a longlearning curve between the ivory tower, where planning istaking place, and remote populations that might be studied.
"It's not that what they're doing is so awful," said RAFIresearch director Hope Shand, "it may have some very usefuland important applications. But there's a tremendous amountof naivete."
For instance, Contreras countered assumptions that indigenouspeoples will have trouble making informed decisions aboutwhether to participate in this sophisticated technologicalenterprise. However, he said populations might not agree withthe inference that at least some of them are doomed todisappear soon, and could think the project insults their senseof dignity.
King, whose late mentor, Allan Wilson of the University ofCalifornia at Berkeley, used polymerase chain reactionamplification of genes to study human evolution, has used hergenetic footprinting skills to reveal the identities of adoptivechildren whose parents were slain during "disappearances"under former Argentine military regimes.
Both the scientists and advocates for the prospective researchsubjects agree that issues of identity could be much moresensitive than commercial implications.
Native peoples may be forced from territories they currentlyoccupy once their origin is traced through genetic sampling,Contreras explained, and he believes that even the theoreticallyremote possibility of biological warfare should be addressed inadvance.
Molecular biologist Wilson predicted before his death last yearthat these studies would show that people of different racescan be closer genetically than some individuals within eachrace. "The scientists involved firmly believe that if anything,this is likely to undercut racism," Greely said.
The researchers hope to study the DNA of 400 ethnic groups,many of them indigenous peoples, for clues regardinganthropology and evolution. Some medical benefits, such asidentification of disease susceptibility or resistance, might alsoresult.
The project, with an estimated tab of $23 million, is not part ofthe $3 billion Human Genome Project. Proponents plan to meetagain in Alghero, Sardinia, Italy in September to prepare tostart the project as soon as 1994.
"They appear to be quite sensitive to this matter," Contrerassaid. "My concern is that they're conducting this activityanyway," before addressing subjects' objections.
-- Nancy Garcia Associate Editor
(c) 1997 American Health Consultants. All rights reserved.