The Issue of Race and the Potential Dangers of the Genome Project of Africa and the ‘Phenome’ Project
 

Ruqaiijah Yearby – Tarrytown 2010

One central purpose of genetic research is to determine specific genotypes associated with diseases.  Most thought that the Human Genome Project Race put to rest that race accounts for significant genetic difference among humans, which accounts for disparities in disease.  Yet, race still remains central in genetic research.  The Genome Project of Africa and the ‘phenome’ project illustrate the perils of the continued use of race in genetic research.

Recently announced, the Genome Project of Africa has several goals, including using new research tools to help us understand the relationship between genes and the environment, in health and disease and building capacity on the African continent so that African researchers can conduct these kinds of studies.  The project is potentially beneficial because it will be easier to delineate the genetic variants linked to diseases that predominate in Africa.  However, the project may also perpetuate colonial racialized notions that one group of Africans is more superior or civilized to another based on genetic differences. 

Although the organizers recognized that research in the past had been in a colonial mode of doing science because the research has been done in Africa and then the byproducts have been transported to other countries, I suggest that some of the new forms of research such as the Genome Project in African continue this colonial mode by the structure of the research, the statements made by researchers and the explicit and implicit goals of the research.

For example, racialized theories of superiority and civilization are the basis for the division of Africa into Northern and Sub-Saharan Africa.  The Genome Project is concentrating only on Sub-Saharan Africa, even though Northern Africans are affected by the same environmental factors. The belief of inferiority/superiority is also apparent in statements made by the key organizers of the project and the overall ideology of the project. 

In a public meeting announcing the program, one organizer stated that “if you look at science and genetics, most of the research is coming from Africa, and indeed not led by African scientists, I don’t think that’s because of lack of intellectual capacity, but not having the resources to do that at the present time.” Discussing any ethnic or racial populations' intellectual ability is a eugenics idea that ethnic and racial groups are innately inferior.  It is ironic that this statement was made about the ability of Africans to be scientist, when the project is partnering with African scientists.  Moreover, the genome project has shown that the differences among ethnicities and races is minute, yet those organizing the genome project in Africa still harbor this belief that there is some difference in intellect linked to ethnicity or race.  Although the speaker seems to discount the possible inferiority of Africans, by raising the issue at all means that some believe that it is relevant and maybe used as an explanation if the project fails to accomplish the task to train Africans or build capacity.

The goal of building capacity will be accomplished by setting up clinical research centers, molecular labs, and a biology repository, but this will be limited by the capacity of the country.  If the purpose of the project is in part to build capacity, then locating the project in countries that already have capacity is not a benefit.  If the country already has the capacity then only money is needed, not linkage with outsiders.

Moreover, the organizers of the program noted that the program would not only focus on communicable diseases predominate in Africa, but also on non-communicable diseases such as obesity and diabetes that primarily effect the West.  The reason submitted is because these diseases are now appearing in Africa.  Yet, if the real purpose is to focus on Africa then the study should be on the diseases that are predominately found in Africa.  The diseases that should be targeted should be chosen in consultation with Africans who will be a part of the research.  Otherwise, the products of the research have the potential to benefit the rest of the world more than Africa. The reason that I make this statement is because the organizers were clear that it has been difficult for them to identify the genes linked to the diseases that are primarily in the West.  There is too much genetic variability due to mixing, whereas in Africa the populations are isolated so it will be easier to identify the genes linked to diseases such as obesity and diabetes. 

The limited placement of project facilities and beneficial application to the world may lead to violations of distributive justice if the benefits of the program are not equally distributed to all those that participate in the research.  While the Genome Project of Africa separates populations based on out-dated racialized theories of eugenics and may potentially exacerbate the unequal divisions of access to science across Sub-Saharan Africa, the ‘phenome’ project builds on neo-eugenic theory of the significance of racialized physical traits in disease. 

A phenome is the set of all phenotypes expressed by a species.  Examples of human phenotypic traits are skin color, eye color, body height, or specific personality characteristics. Although any phenotype of any organism has a basis in its genotype, phenotypic expression may be influenced by environmental influences, mutation, and genetic variation such as single nucleotide polymorphisms (SNPs), or a combination of these factors.

The ‘phenome’ project’s goal is to characterize the complete phenotypic representation of species, including humans.  Examples of the ‘phenome’ project are the UK Biobank and the Personal Genome Project.  Although each project seems scientifically valuable, a project that focuses primarily on characterizing the complete phenotypic representation of all humans’ sounds very similar to the eugenic studies of Francis Galton.  For example, Galton studied biology of racial differences and inheritance of intelligence by observing physical traits, while the current project aims to differentiate between individuals based on measuring phenotypic features (physical traits).  Furthermore, just as eugenics focused on phenotype to support genetic differences, the ‘phenome’ project attempts to use the phenotype to identify genetic basis of sets of targeted diseases. 

Hence, although each project (Genome and Phenome) presents a potential benefit to greater society and to those residing in Africa, there are significant dangers associated with each project.  One of the chief potential dangers is the sustained misuse of race as a genetic factor that separates humans and their disease status.  The key to providing protection is first to acknowledged the history of these racialized theories in science.  Moreover, I suggest that categories of race be removed entirely from these projects.  Instead, these projects should link samples solely to environment.  The category of environment should include country, townships/cities, culture, and lifestyle.  This will more aptly classify the genome and phenome that are significant to disease in a majority of cases, by removing the sociopolitical and inconsistent nature of skin hue.