Human Genome Diversity Project

The Human Genome Diversity Project (HGDP) was started by Stanford University's Morrison Institute and a collaboration of scientists around the world. The HGDP is in no way related to the Human Genome Project, and has attempted to maintain a completely distinct identity. Unlike the latter, which has attempted to map the entire human genome, the HGDP has attempted to map the DNA that varies between humans, which is a less than 1% difference.

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Potential benefits

Members of the HGDP have maintained that diversity research could yield new data on various fields of study ranging from disease surveillance to anthropology. The Morrison Institute has maintained that diversity research could create definitive proof of the origin of individual racial groups.

Another potential gain lies in research on human traits. For example, through diversity research one can identify the causes of a long or short nose and how such characteristics relate to racial or ethnic groups and finally how individual racial characteristics are part of a pattern of human development. The HGDP has maintained that research needs to be conducted as quickly as possible before small native populations such as those in South America become extinct. HGDP scientists have argued that in order gain a full assessment of human development scientists must engage in diversity research immediately.

A third benefit would be in disease research. Diversity research could help explain why certain racial groups are vulnerable to certain diseases and how populations have adapted to these vulnerabilities (see race in biomedicine).

Current status

There have been reports that the HGDP halted, that protests from organizations like The ETC Group(and other non-governmental organizations) drained support for the HGDP, that Stanford University's Morrison Institute shut down all research, and that the HGDP will never be completed in its current form, but research did continue. The Archaeological Institute of America (Archaeology, May/June 2006, Volume 59, Number 3, page 48) reports on a representative world distribution of genetic ancestry, 52 distinct ethnic groups, concluded by HGDP research:

Alternative approaches

In 1995, the National Research Council (NRC) issued its recommendations on the HGDP. While the NRC endorsed the concept of diversity research, it criticized the HGDP's procedure, claiming that the HGDP had too many ethical lapses and problems. The NRC report suggested several alternatives such as doing sampling anonymously (i.e. sampling genetic data without tying it to specific racial groups). While such approaches would eliminate the concerns discussed below (regarding racism, weapons development, etc.), it would also prevent researchers from achieving many of the benefits that were to be gained from the project.

Some members of the Human Genome Project (HGP) argued in favor of engaging in diversity research on data gleaned from the Human Genome Project. Most agreed that diversity research should only be done in conjunction with the HGP and not as a separate project.

A number of the principal collaborators with the HGDP have been involved in the privately-funded Genographic Project launched in April 2005 with similar aims.

Potential problems

Racism

One major concern with the research project has been the potential for racism in certain countries resulting from HGDP data. Some have speculated that when governments are armed with genetic data linked to certain racial groups, they could feel the need to deny people rights based on this data. For example, countries could define races purely in genetic terms and deny a certain person right(s) based on their lack of conformity to a certain race's "genetic model."

Despite the “good intentions” of the project, infused in the discourse of the HGDP are both historical and problematic notions of racialization (“the vanishing Indian”) and colonialism. Consequently, indigenous communities, NGOs, and human rights organizations have entered into a ‘war of rhetoric’, denouncing the project since its outset, based on issues of scientific racism, colonialism, biocolonialism (patenting), informed consent and the prospect of biological warfare. The rhetoric used by the HGDP and its participants to describe the project and its ambitions has been recognized as extremely problematic. Identifying indigenous peoples as “isolates of historic interest” positions them within racialized notions of science.

The ETC Group (formerly RAFI) has been a major critic of the HGDP citing issues of racism and stigmatization that could occur should the HGDP be completed.

Informed consent

One of the most important tenets of the HGDP debate has been the social and ethical implications for indigenous populations, specifically the methods and ethics of informed consent. Some questions include: How would consent be obtained? Would individuals or groups fully understand the project’s intentions, particularly with regards to language barriers and differing cultural views? What is ‘informed’ in a cross-cultural context? Who would be authorized to actually give consent? How would individuals know what happened to their DNA? For how long would their information be kept in DNA databases?

Patenting

With the rise of the biotech industry, patenting and the commercialization of genetic data also hold serious implications for indigenous people; will they see benefits? Profit motivation makes these populations extremely vulnerable to exploitaiton.

Biological weapons

Another concern with the HGDP has been the threat of racially targeted biological weapons from the project. Since the project will identify genes that tend to conform to specific racial groups, many have theorized that groups could create biological weapons that could target specific racial groups. Should the HGDP uncover specific diseases that tend to affect certain races, it is conceivable that groups could develop a biological weapon that targets certain diseases and kills that specific racial group only. While most have called these ideas ridiculous, many concede that such weapons are theoretically possible and could have a dire impact.

Uneven application

8 of 9 DNA groups under Ctrl/South category belong to Pakistan even though India is in the same group with about 7 times the population of Pakistan and with racial diversities many times over.

Use of genetic data for controversial non-medical purposes

Use of genetic materials for non-medical purposes not agreed to by indigenous donors, especially purposes that create possibilities for human rights violations, is a concern. An example can be found in the paper "Developing a SNP panel for forensic identification of individuals" by HGDP investigator Kenneth K. Kidd, Forensic Sci Int. 2006 Dec 1;164(1):20-32 describing use of DNA samples from indigenous populations to explore a forensic identification capability based on ethnic origins.