Why the Human Genome Diversity Project is Problematic for the Indigenous Community

Liz Douglas

Introduction

Proposed in 1991, the Human Genome Diversity Project was created to collect, catalog and store the genetic information that would allow scientists to construct maps of genetic diversity, understand migration patterns, evolution, and determine the relationship between genes, diseases and ethnic groups (Wheeler). Another aim of the project was to preserve the genetic information of communities that were “isolated” and “endangered” (Andrews, 65-81). The communities the Human Genome Diversity Project propose to sample question the sincerity of the Human Genome Diversity Projects goals. After all, if the Human Genome Diversity Project was truly interested in preserving these “endangered” cultures, why not use the money they are spending on collection procedures- upwards of $500 per subject for an estimated total program cost of $23-35 million (Bauman, page 138) - and spend it on efforts to ensure their survival as a community instead of merely preserving their genetic material (Liloqula). After all, genes cannot tell you about the oral or ancestral traditions of a community. If one were genuinely interested in saving a culture- not just the potentially profitable genes and/or gene products- spending copious sums of money on collection of biological materials wouldn’t be a very logical course of action. It is easy to understand why the indigenous groups targeted for “preservation” by the Human Genome Diversity Project are more than suspicious of a hidden agenda.

Lori Andrews made an interesting observation regarding the push to preserve the genetic material of the “endangered” communities. In her book Body Bazaar”, she notes “In some ways, the call [by the HGDP organizers] to save indigenous genes sounded much like the ‘Save the Wales’ sentiments that had circulate some twenty years before, considering people simply as objects, no more able to articulate their preferences than whales” (page 77). Officials of the Human Genome Diversity Project claim that their interest in the genetic information is purely academic, but research scientists in the past have already submitted patent applications on a handful of genes, gene products, cells and cell lines from the samples taken from indigenous communities (Andrews, pages 64-81). It is not surprising that the indigenous communities are less than excited about this project.

In a country like the United States where anything can be bought and sold, science reigns supreme and the average mentality is more person centered than group oriented, it is not surprising that the Human Genome Diversity Project was approved and implemented. However, according to the Duquesne Law Review, the ruling on one of the key landmark court cases that made patents on the human body possible was questionable at best. Moreover, there is a distinct smell of exploitation and imperialism to the Human Genome Diversity Project, regardless of whether patents are ethical are made on the genetic material of the communities or not. There is growing public outcry against the Human Genome Diversity Project in western countries and protest from indigenous groups has been pronounced since the inception of the program. I intend to argue that this opposition is warranted.

Moore v. Regents of the University of California

In this landmark case John Moore sued his doctors for theft of his spleen after he was treated for hairy cell leukemia at the University of California Los Angeles Medical Center (Wagner page 935). The splenectomy he received in 1976 cured his cancer, but his physician insisted that Moore return to the center between 1976 and 1983 for more blood work (Wagner, page 936). According to Moore, his physician insisted his doctors in Seattle could not do the blood work and that he return to the UCLA medical center for further lab tests (Andrews pages 27-28). Moore, suspecting malpractice, hired a lawyer who discovered that Moore’s blood had contained rare and valuable viral antibodies (Andrews pages 27-28). Moore’s cells had been transformed into an immortalized cell line--named, ironically, Mo-line--and assigned patent number 4,438,032- a patent that earned over three billion dollars between 1984 and 1990 (Andrews, pages 27-28). However, a deeply divided California Supreme Court ruled against Moore for three reasons: First, there was no legal precedent to support Moore’s claim (Wagner, pages 936-937). Second, the court interpreted California state laws regarding the disposal of human tissues after use in such a way that essentially ignores the interests of the patients once the tissues (or cells) have been removed (Wagner, pages 936-937). Third, the patented cell lines were distinct from the cells removed from Moore’s body, and thus the cell line and its products could not be Moore’s property (Wagner, pages 936-937).

The Duquesne Law Review contends that the reasoning of the majority in Moor v. Regents of the University of California was questionable. On the first argument of the lack of judicial support for Moore’s claim, the Duquesne Law Review notes the reason there are no past rulings in favor of Moore’s claim was because it was a case of first impression- a point of law not lost on the dissenting justices, who also noted that “the issue is as new as its source… growth in the commercialization of biotechnology…a court should not refrain from finding such a cause of action merely because another court had not so held or the legislature had not addressed the issue” (Wagner, page 938-943).

On the second point, the majority interpreted the California statute in such a way that “limited the patients’ interests in tissues/cells once they have been removed”. However, commentaries on the ruling note the California statute exists as a matter of public health, whereby the biological materials should be either interred, incinerated or disposed of in a way approved by the State Department of Public Health- a statute that does not give the physician any more right to the biological material than to the patient (Wagner pages 938-943). In this particular case, the physician did not indicate to the patient that the spleen would be used in any research- the patient was made to believe that the spelnectomy must be performed for medical necessity only (Andrews, pages 27-28). Again, a dissenting justice points out the subtlety in the law that should have provided Moore with legal recourse to obtain some kind of compensation or ownership of the ill-gotten biological goods. Dissenting justice Broussard also reasoned that the majority did not favor the property rights of an individual in a body part after it was removed because they “were concerned with holding liable innocent researchers” (Wagner, pages 938-943). Justice Broussard also noted the majority did not have any “authority, common or statutory law” that backed their argument regarding the patient’s limited rights to the use of the organ after removal. While Justice Broussard had no common or statutory law that would give the patient more rights to the use of a removed organ (or tissue), he referred to the Uniform Anatomical Gift Act as a demonstration of the California’s policy “concerning an individual’s authority to control the use of a… body part” (Wagner, page 939-940).

Finally, on the third argument regarding the ownership of the patented cell line, the majority ruled the cell line was different enough that Moore could no longer claim ownership. The majority argued that allowing individuals to sue for the use of their tissues would “impede research by restricting access to raw materials and would threaten to destroy the economic incentive to conduct important medical research” (Wagner, page 938). Wagner points out that this argument would only be applicable to situations when a researcher obtained a sample from an existing cell bank and that in cases of fraud or breach of informed consent (like the Moore case); this reasoning would not apply (Wagner, page 938). A dissenting justice on the case also noted that applying conversion law would not have a negative impact on researchers who obtain tissues using tissue and cell banks (Wagner, page 938).

The flawed reasoning in the Moore v. Regents to the University of California highlights the dubious nature of the legal precedents that helped create a legal environment that allowed cell lines and gene sequences to be patented. This case also showcases many of the ethical issues like intellectual property rights, patent law, and informed consent that are part of the controversy biotechnology creates in the United States and abroad. Interestingly, a dissenting justice in Moor v. Regents of the University of California noted that “fairness abhors the unjust enrichment of one at the expense of another, particularly where the two are not in equal bargaining positions” (Wagner, page 942)-- a statement that sounds a lot like an indictment against capitalism itself. It is difficult to think the Human Genome Diversify Project would expect indigenous communities that do not participate in privitistic and capitalistic social structures to willingly participate in a program that shares many of the features of privatization and commodity that were problematic in the Moor v. Regents of the University of California case. John Moore spoke to the parallels between his legal battle and the HGDP, suggesting that “if his cells could be used without his permission in the United States with all its regulatory safeguards, politically weak minorities in developing countries might have even less control over what happens to their human biological tissue” (Wheeler).

Informed Consent and the HGDP

Another interesting parallel between the Moor v. Regents of the University of California and the HGDP is the use of deception in the expropriation of biological materials--a practice that according to Justice Broussard is unfair on several levels, but particularly because the two parties are in unequal bargaining positions. In the Moore case, the patient was led to believe by his physician that removal of his spleen was medically necessary--which may have been true enough. What his doctor failed to mention was that he was going to use the spleen and subsequent blood draws in his personal research. Similarly, HGDP scientists told groups of indigenous peoples that they were testing the population for diabetes--which was true enough (Baumann, et all, page 143). However a group of cameras followed HGDP researchers on their fieldwork in Colombia for a television program based in the United Kingdom filmed instances where, “indigenous groups were given a very limited view of the project. Its implications were not made clear to the various communities and discussions of the wider objectives of the project were overshadowed by the carrots offered to the communities” (i.e.: diabetes tests) (Baumann et al, page 143).

Although the California Supreme Court ruled against Moore for several (as noted) questionable reasons, the court did give Moore some legal recourse--they allowed him to pursue litigation based on breach of informed consent (Wagner, pages 935-942). It is interesting that breach of informed consent was the only ruling the California Supreme Court made in favor of John Moore, yet abuses of the practice of informed consent are taking place in the field at the hands of HGDP scientists in their efforts to obtain the biological materials from indigenous groups. According to Lori Andrews, when a Roch Molecular Scientist was questioned about the issue of informed consent and indigenous groups, his reply was “They wouldn’t understand what HLA typing is in the first place” (Andrews, p.76). While this particular scientist was not part of the HGDP, Andrews and Milken note that, “the Roche Molecular Systems scientist was articulating a common assumption that indigenous peoples have little ability to understand the reasons for giving blood to a research project and are therefore unable to truly give informed consent.”(Andrews, page 77). Andrews and Milikens also cite bioethicist George Annas on the subject of the complexity of informed consent and indigenous groups, who stated, “ ‘If they understood the project, they would refuse, and if they don’t understand, they can’t give consent’ ” (Andrews, p. 78). This is an interesting point, and it lends itself to an explanation as to why the researchers from the HGDP and other research labs are opting to tell indigenous peoples only part of what their tissues will be used for.

Indigenous Groups Protest

All of the arguing over the semantics of statutes, debate about points of law, and ethical issues raised by patents, informed consent and biotechnology within United States borders are irrelevant to the people at the heart of this tangled issue- the groups which the Human Genome Diversity Project planners have targeted for sampling. As one member of an indigenous group opposed to the HGDP asserts, “…the HGDP is irrelevant to indigenous peoples. It focuses on issues that are unimportant to us. We know who we are. We know where we have come from and why we are here.” (Baumann et al, page 147). In the “Declaration of Indigenous Peoples of the Western Hemisphere Regarding the Human Genome Diversity Project” signed by a number of the groups targeted by the HGDP, all of the legal wrangling is dismissed completely. Quoting the declaration directly, the communities assert that, “We denounce and identify the instruments of intellectual property rights, patent law, and apparatus of informed consent as tools of legalized western deception and theft.” (Amazanga, et all).

Informed consent and intellectual property issues aside, the Human Genome Diversity Project is problematic to indigenous groups for a number of other reasons. First, one of the principle objectives of the project is to “understand who we are as a species and how we came to be” ( Baumann, et all). Many of the groups selected for sampling already have their own beliefs about historical origins, and according to Debra Harry the assumptions posed by the HGDP that the “origins and/ or migrations of indigenous populations can be ‘discovered’ and scientifically ‘answered’ is insulting to groups who already have strong cultural beliefs regarding their origins.” (Harry, pgs 8-9).

While some of the groups targeted for sampling by HGDP planners may only object to the methods of the project, other groups protest genetic sampling because it violates their cultural beliefs. For example, a Hopi geneticist explains that performing DNA tests on a Native American remains would be as offensive as cloning Jesus would be to a Catholic (Andrews, page 75). Another example of the incongruity between western and indigenous beliefs about genealogy is the Maori. The Maori, among others, believe that an ancestral life spirit passed down through the generations permeates the physical gene and that genes are not objects that can be owned- a very different understanding from western concepts of genes (Mead, page 48). The Maori hold that, “All life forms should be treated in a way that respects their intrinsic value as living manifestations of creation” (Mead, page 47). A leader of the Maoris, Aroha Te Pareake Mead, aptly points out that this difference comes from “understanding of the origin of life and humanity, the role and responsibilities to sacredness, and the commitment to provide a heritage for future generations. This highlights the difference in defining a human gene, its purpose, and who might be considered the ‘owner’ or ‘guardian’”(Mead, page 48). Blood itself is sacred for other groups and its use in group rituals both strengthens social values and characterizes group identity- the very act of withdrawing blood can violate cultural norms for certain groups (Andrews, page 74-5).

Other groups do not agree with western science itself. Some groups feel that “Science separates us from nature, thus separating us from the sacredness of life… you cannot explain life in terms of chemicals and genes … this reductionism is what causes the proponents of the HGDP to look at people in such a dehumanized way.” (Baumann et al, page 145). Aroa Mead voices the views of the Maori community, telling us “Western science feeds values and aspirations of free market imperialism” (page 48). However, not all of the targeted communities oppose science per se- some of the groups take issue with the methodology of the project (Baumann et all, page 145). As Alejandro Argumendo notes, “We are not against science when it is co-operative, participative, controlled and transparent. But the HGDP does not fit this mould, so we cannot support it” (Baumann et all, page 145). Ruth Lilqula, director of Agricultural Research of the Solomon Islands, says, “We have seen and experienced the benefits of medical research and accept that there may be a vast potential… using gene technologies… We believe that the exclusive monopoly and control of genes and gene products will frustrate or prevent innovation and the exchange of information” (page 42).

As many opponents of the Human Genome Diversity Project have noted, the project is also objectionable because it mirrors the exploitative nature of the colonial era. Cries of indignation are echoed through diverse communities. Some declare that the project “represents no more than ‘genetic colonization’ that will benefit the north at the expense of the south” (B.JC). The Maori feel that the project will use the genes of the communities to “provide new commodities for trade” (Mead, page 48). Alejandro Argumando asserts that, “The HGDP is a manifestation of the commodification of the sacred…the HGDP is business disguised as science” (Buemann, et all page 145). Others have noted the similarities between the “trinket exchange” between the researchers and the indigenous peoples and the colonial exchanges of beads for land (Andrews, page 79). The communities are acutely aware of the exploitative nature of the project that so closely resembles the injustices of the past. The Arahuaco note the similarities saying, “Our land, our culture, our subsoil, our ideology and our traditions have all been exploited. Only this time they are using us as raw materials” (Andrews, page 73). Aboriginal groups point out, “Over the last 200 years, non-Aboriginal people have taken our land, language, culture, health- even our children. Now they want to take the genetic material which makes us Aboriginal people as well.”

For all of these reasons and many more, many of the indigenous groups have denounced the Human Genome Diversity Project and declined to participate. By 1996 there were 18 declarations against the project and some countries have created “Gene Prospecting Free-Zones” (Mead, page 50). Associations of HGDP targets call on religious communities, human rights organizations, funding agencies, individuals and institutions to refuse to take part in the program or to provide other assistance (Amazanga et all). These associations also urge other groups to unite and protest the HGDP Project and encourage the international community to develop policy and conventions that protect the integrity of cultural beliefs and protect them from genetic manipulation (Amazanga et all). Hopefully their right to refuse participation and their cultural beliefs will be respected, but as past history has shown, it is not always easy to fight the powers of colonization.

Works Cited

1) Amazanga Institute et all, “Declaration of Indigenous Peoples of the Western Hemisphere”, Cultural Survival Quarterly, page 63, summer 1996.

2) Andrews L., Nelkin D., Body Bazaar: The Market for Human Tissues in the Biotechnology Age. New York: Crown Publishers, 2001.

3) Baumann, Bell, Koechlin ,and Pimbert eds (1996). The Life Industry: Biodiversity, People and Profits, London: UK, Intermediate Technology Publications.

4) B. JC, “The Vampire Project”, Hastings Center Report, page 2Jan-Feb, 1995.

5) Harry, Debra, “Human Genome Diversity Project and its Implications for indigenous peoples”, Gene Watch, October 1996, pages 8-9.

6) Liloqula, Ruth, “Value of Life: Saving Genes versus Saving Peoples”,

Cultural Survival Quarterly, pages 42-45, summer 1996.

7) Mead, Aroha Te Pareake, “Genealogy, Sacredness, and the Commodities Market”, Cultural Survival Quarterly, pages 46- 51,Summer, 1996.

8) Wagner, Danielle M., “Property Rights in the Human Body: The Commercialization of Organ Transplant and Biotechnology”, Duquesne Law Review, 1995, V.33: 931-958.

9) Wheeler, David, “A Worldwide Effort to Collect DNA Encounters Opposition”, The Chronicle of Higher Education, page A-20, September 27, 1996.