Why Human Genome Diversity Project Failed

Introduction 

In 1991, there was a consensus among top geneticists and evolution biologists from the United States to sample and store the human genetic diversity of the world in a study project famously known as the Human Genome Diversity Project (HGDP). The main purpose of this international research project was to collect blood samples from the world’s indigenous populations which were isolated from which their DNA could be analyzed to determine human species’ origin as well as the migration pattern before such groups vanished. From the onset of the project, its ideas motivated leaders particularly from the human genomics community from all over the world. The main challenges facing the project were the significant financial requirements as well as the time constraint. 

However, these two foreseen challenges became the least of the problems presenting obstacles to the existence of the project. Problems started soon after the second workshop on its establishment with people accusing it of promoting some form of neo-colonialism. Before, no one had envisaged the possibility of this project encountering such significant resistance 1 . As such, the continuation of the Human Genome Diversity Project has faced much opposition that has led to its halting. This study sets out to explore the Human Genome Diversity Project in its different perspectives. 

The Human Genome Diversity Project (HGDP) 

The Human Genome Diversity Project was proposed in 1991 by a group of population geneticists, with the purpose of mapping genetic diversity in various indigenous populations by determining both similarities and differences between them 2 . The original author of this project was Luigi Cavalli-Sforza, a renowned scientist who dedicated years of work in this study based on using genetics to establish an understanding of human migration as well evolution. The project took shape in the 1990’s with the objective of including 500 tribes from all over the world through the collection of their blood samples for their cells and DNA which could then be “immortalized” through some laboratory processes to create cell lines. Scientists would then use these cell lines for growing cells from which they can take small samples for DNA analysis. 

This was to be a significant project done on a huge scale and for the data to be made publicly available for other scientists to conduct further research studies from the DNA or the secondary data resulting from the original research. The project would satisfy the need to establish the genetic profile of indigenous population for the purpose of gaining an understanding of their genetics which could lead to the discovery of the human species past. These indigenous groups are isolated and thus provide the ideal basis for which there will be the examination of genetic frequencies that provide a clear history to the past. Such knowledge is expected to help determine humankind history through those humans who migrated from Africa to other parts of the world as well as the present being. 

Difference between the Human Genome Diversity Project and Human Genome Project 

The Human Genome Project (HGP) was a 1990 international scientific research project that was publicly funded and established with the purpose of determining the DNA sequence of the whole euchromatic human genome and the mapping of the entire genetic makeup of the human genome from the physical as well as functional perspectives. The Human Genome Diversity Project, on the other hand, was also an international scientific project that was launched at the same time but with a different aim of exploring the genetic diversity of only the indigenous populations worldwide before these groups became extinct. The Human Genome Diversity project was originally created by Luigi Cavalli-Sforza in Morrison Institute-Stanford University together with other scientists all over the world. These were researchers working in different laboratories at Stanford University from two departments. 

People from the Department of Genetics, Stanford Human Genome Center. Stanford University School of Medicine included Luigi L. Cavalli-Sforza, Jun Z. Li, Hua Tang, Devin M. Absher, Audrey M. Southwick, Gregory S. Barsh, Amanda M. Castro and Richard M. Myers. People from the Department of Biological Sciences, Stanford University , included Marcus Feldman and Sohini Ramachandran. Under the Human Genome Project, Francis Crick, James Watson, Maurice Wilkins, Frederick Sanger, Michael Gottesman and Francis S. Collins participated in different phases of the project launch to its completion. The Human Genome Diversity Project started when the Human Genome Project was still going because the two projects had different purposes. While both of them sought to study human genetics, the HGP was the study for the whole euchromatic human genome while the HGDP was the study of the human genome of only the indigenous populations around the world. 

Reactions that led to Failure of the Human Genome Diversity Project 

People reacted negatively to the Human Genome Diversity Project, leading to its failure. Many indigenous groups that the project sets out to study reacted violently to it. Other geneticists, as well as anthropologists, have also sharply criticized the study on the basis that genetics and the growth of genetic determinism have dominated their field, which has led to many genetic studies that result to different ‘family trees’ for populations. Indigenous people’s organizations criticize the HGDP regarding the specific studies that are to be conducted and a number of various issues that relate to the whole field of genetic research. The first concern presented by the indigenous people was that despite the project involving them heavily; it progressed to advanced stages without their involvement regarding consent and participation. This exclusion had the implication that the moral, socio-economic, ethical, physical and political aspects of the project were not comprehensively discussed, understood and approved by the indigenous people. 

Broadly speaking, five main concerns made native populations to oppose this project. They included colonization, the understanding of the origin of humanity, the rationality of spending large sums of money on the project, access and usage of data and the fear that data collected through this project could face abuse, leading to biological warfare to the indigenous populations. Indigenous people discount the project as another form of colonization just like the forms by Europeans, as it is still fresh in their memories. These reactions have constituted the basis for different attempts to stop the continuation of the project at every opportunity. Indigenous people also feel that they know where they came from, their identity and where they are going. The project’s attempt to seek to reconstruct migration and settlement patterns to gain a greater understanding of the world population and its precursor is therefore seen as foreign and insulting since these native groups don’t relate to western theories. They also see the financial requirements of the HGDP project as a waste of useful financial resources that could be put to alternative use to benefit them. 

The project was estimated to cost between $23-35 million which is greater than the per capita GDP of any of the 110 poorest countries in the world. Indigenous people’s organizations believe that such money could provide these poor communities with better social services which are much needed. Regarding data access and usage, the information obtained from the research could be used to justify the violation of human rights or deny it or even abuse it. Concerning the fear of biological welfare, data from this research would not be controllable, and the possibilities of falling into the wrong hands to perpetuate genocide through biological warfare are very high. 

Indigenous populations’ opposition to the Human Genome Diversity Project in the 1990s 

From its outset in the 1990s, indigenous people refused to participate in the project due to colonialism. Memories of European colonization of the native groups were still vivid in their minds. Many of these communities who were expected to provide the sample needed for this research had and were still experiencing the impact of colonization. Due to colonization, indigenous people became slaves in their lands, they lost the rights to their properties as they were driven out and sent to reservation camps where they suffered and died from diseases that were introduced into their communities by Europeans and consequently became marginalized within the global economy. 

They thus felt exploited and oppressed for the selfish benefits of the Europeans which led them to fight in the quest to regain their property and protect their rights. Their suffering has resulted to mistrust, and anything that is seen to propagate European dominance in the community would automatically face rejection. It is therefore not surprising that the HGDP project was frustrated by their refusal to participate, and it appeared as another form of neo-colonization. Others saw it as an attempt to collect and preserve indigenous people the same way mummies were collected and never returned but instead buried in caves in contravention to indigenous people’s rights. Other scientists also supported the refusal of the indigenous people to participate in this project citing moral issues especially regarding the consent of the participants. 

Measures to aid the success of Human Genome Diversity Project 

Despite relentless initiatives to propel the HGDP, the project that started in 1991 has failed due to reasons centering on political and ethical issues, majorly with the indigenous population organizations that have proactively opposed it. Until these disputes get addressed, it will be difficult for the project to achieve success. The major issues as discussed before including the noninvolvement of indigenous populations and the ethical problems that surround the project. There should be initiatives to ensure that those organizations representing the interests of indigenous population are engaged in every milestone to address their concerns about the rationality of the project. They need education about the benefits of the project and its side effects, and how to tackle the negativities. There are also very many ethical issues surrounding this project. 

The failure of the project is not solely because the indigenous population refused to participate, but for other critics as well who argue that political and financial gains motivate the creation of the project. Regarding the project’s scientific contribution and its potential contribution to a greater understanding of human genetics is in no doubt supported by the majority apart from a few who question it. However, the hurdles that present the main obstacles to the project’s existence revolve around the moral, political and cultural controversy associated with it. There is the need for changes in scientific education as well as professional standards to enhance a better relationship between indigenous people and the researchers who study them 3 Critics of the project argue that it is laden with commercialism, racism, cultural imperialism and exploitation. 

The other issue that raises debate is the proposed informed consent process which is seen by the critics as non-sufficient. These oppositions have led to the delay of this project’s continuation making it a potential failure. To ensure that this project carries on successfully to completion, the organizers and researchers involved with it need to take the necessary initiatives to address the political, moral and cultural issues that the project raises, to gain the support of other stakeholders so as to eliminate the opposition that impedes its progress. 

Contemporary Synthesis 

Scientists in the modern world use a mixture of concepts, promoting both the old as well as contemporary racial norms. They accept and make use of the typically rationalizing concept of “Old World” human types while at the same time do not provide any room to question such ideas when they employ them in liberalizing educational, genealogical, and antiracism efforts 4 . This absorption of the conservative "old race thinking" into modern projects which are of a more liberal nature by genetic scientists, humanities scholars, and social scientists is known as “contemporary Synthesis.” In science, thinking in terms of race has been there from time immemorial. Only recently, it’s when there have been minor deviations from this line of thinking. 

Scientists who have the tendencies to organize their studies based on race are now using this ideology to include racial minorities in their projects with the aim of enhancing social justice to these races as well as allowing them to have economic benefits. The inclusion of race as a variable in genetic studies is now increasingly supported by policy makers as well as scientists for the betterment of all races without discrimination. As such, such kind of racism is seen to be of good intentions. There are several examples of racist projects whose objectives are to the advantage of the races. For example, there are racially tailored pharmaceuticals which were developed in the early 2000s for the purpose of providing medical solutions to groups of people that have a history of being abused and neglected. 

The initiatives by Direct-to-consumer ancestry testing companies; to simplify human populations and their origins which might seem racist, has had real impacts on these communities. The reason for this is because it has led to the restoration of their previously lost histories as a result of injustices like slavery 5 . The inclusion of the indigenous people in the genetic database ensures that they also form part of the genetic revolution. Knowledge of their genetic information will not only provide an understanding of the history of humanity and their migration pattern but may also provide the necessary genetic material to aid in such aspects as forensic racial profiling of DNA in crime scene as well as the development of advanced medical solutions for the benefit of such groups. The organizers and researchers of Human Genome Diversity Project had their primary objective of achieving greater developments in the knowledge of the human race as a species as well as the migration history, but people opposed it, thinking that its intentions were not good. 

Based on the reputation of the project’s leaders, it cannot be that they had bad intentions in supporting this project due to the respect that they have earned from their past work that promoted human rights and fight racism before the inception of the project. Mary-Claire King used genetic techniques to help in the identification of kidnapped children in Argentina’s “Dirty War”, Luca Cavalli-Sforza opposed William Shockley’s initiative to sterilize women from “inferior races” while Robert Cook-Deegan worked for physicians for human rights 6 . Based on these past records, there is an understanding that the scientists only needed to increase knowledge while countering terrorism as well as Eurocentrism and not to seek financial or political gains. 

The purpose of Human Genome Diversity Project 

The goal of the Human Genome Diversity project was to gain greater knowledge about the human species and how it came to be, through the analysis of the human genetic diversity of indigenous populations. The reason as to why this study was to be conducted only on the native population was that there had been so many social changes in other populations which have led to their mixing, causing identities of indigenous groups to vanish in the process. A clear understanding of human evolution history would thus only be made possible through studying the genetic profile of those isolated populations that have not been interfered with through the mixing of populations. The gene pool from these groups would enable the discovery of human origins and their migration patterns. This study was urgent because these populations may become extinct and knowledge about their genetic history would disappear. 

The project also required large sums of funds and together these presented significant challenges. This project thus promised an advancement of knowledge on genetics and its proponents encouraged the scientific community to act with speed to ensure that such knowledge is available for studies before it got lost. The study fascinated different organizations which joined forces to make sure that the research takes place by designing the logistics and contributing the needed funds. The Human Genome Organization (HUGO) investigated the best way through which the project could be undertaken, and other organizations provided funds required for three planning workshops. These organizations included the National Human Genome Research Center (NHGR), the National Science Foundation (NSF), the National Institute of General Medical Sciences (NIGMS) and the Department of Energy (DOE). 

Why Human Genome Diversity Project failed 

The Human Genome Diversity Project has failed to thrive since it was first proposed 7 . Introduced in 1991, the project was expected to be started by 1994 despite the challenges posed by time pressure as well as the tens of millions of dollars required. The time factor and funding requirements were the only issues foreseen by the project organizers as challenges without the consideration of resistance that the project would face. In the second year since its inception, the project started facing opposition from many entities leading to its failure. The second planning workshop for the project took place in October 1992. Immediately after this workshop, the project faced a series of attacks from different sides. In May 1993, the project faced condemnation by some physical anthropologists that it propagated racist biology. During the same year in June, indigenous population organizations representing 14 UN member states called for its immediate discontinuation through a declaration. 

In the following month in July, there was another opposition from the Third World Network which accused the project of violating the human rights of indigenous populations by using them as objects of scientific research and turning them into “material for parenting” 8 . Within the same year, the project encountered another resistance from the World Congress of Indigenous people which claimed that the project had misplaced priorities in collecting the indigenous people’s blood instead of minding their well-being. This trend continued, and by five years later, more than a hundred organizations promoting the right of tribes in the United States as well as indigenous population entities from all over the world had presented their declarations opposing the project. 

Conclusion 

The Human Genome Diversity Project is an initiative of scientists to gain a deeper understanding of the human species regarding its origin as well as the migration aspect through the study of indigenous populations from all over the world. Despite its apparently good intentions, it has faced considerable opposition from various sources with the main issues centering on political, moral and cultural bases. As a result of this resistance, since its launch in 1991, the project has never been completed and there is still much debate going around regarding its rationale. The continuation of this project may thus depend on how the organizers and the researchers directly involved with it can successfully address all the contentious issues that surround it. 

Bibliography 

Reardon, Jenny. 2009. Race to the Finish: Identity and Governance in an Age of Genomics. Princeton University Press. 

Greely, Henry. T. 2001. Human Genome Diversity: What about the other human genome project? Macmillan Publishers Ltd. 

Fullwiley, Duana. 2014. The Contemporary Synthesis: When Politically Inclusive Genomics Science Relies on Biological Notions of Race. ISIS: The University of Chicago Press Journals. 

M’Charek, Amade. 2005. The Human Genome Diversity Project: Ethnography of Scientific Practice. Cambridge. Cambridge University Press. 

1 Reardon, Jenny. 2009. Race to the Finish: Identity and Governance in an Age of Genomics. Princeton University

Press.

2 M’Charek, Amade. 2005. The Human Genome Diversity Project: Ethnography of Scientific Practice. Cambridge. Cambridge University Press.

3 Reardon, Jenny & Tallbear, Kim. 2012. ‘”Your DNA Is Our History”: Genomics, Anthropology, and the Construction of Whiteness as Property. Chicago: The University of Chicago Press Books.

4 Fullwiley, Duana. 2014. The Contemporary Synthesis: When Politically Inclusive Genomics Science Relies on Biological Notions of Race. ISIS: The University of Chicago Press Journals.

5 Fullwiley, Duana. 2014. The Contemporary Synthesis: When Politically Inclusive Genomics Science Relies on Biological Notions of Race. ISIS: The University of Chicago Press Journals.

6 Reardon, Jenny. 2009. Race to the Finish: Identity and Governance in an Age of Genomics. Princeton University

Press.

7 Greely, Henry. T. 2001. Human Genome Diversity: What about the other human genome project? Macmillan Publishers Ltd.

8 Reardon, Jenny. 2009. Race to the Finish: Identity and Governance in an Age of Genomics. Princeton University

Press.