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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 less than 1% different.[citation needed]

Contents

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 to 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:

Africa  Asia      Europe
Bantu  Ctrl/South Eastern Asia    Adygei
Biaka  Balochi Khmer Mongola    Basque
Mandenka  Brahui Dai Naxi  French
Mbuti pygmy  Burusho Daur Oroqen  North Italian
Mozabite  Hazara Han (N. China) She  Orcadian
San  Kalash Han (S. China) Tu  Russian
Yoruba  Makrani Hezhen Tujia  Sardinian
   Pashtun Japanese Xibo  Tuscan
   Sindhi Lahu Yakut  
Native America   Uyghur Miao Yi  
Colombian         Oceania
Karitiana  Western Asia      Melanesian
Maya  Bedouin      Papuan
Pima  Druze      
Surui        

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

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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? These questions are specifically addressed by the HGDP's "Model Ethical Protocol for Collecting DNA Samples".[1]

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 exploitation.

Biological weapons

Another concern with the HGDP has been the threat of racially targeted biological weapons from the project.[citation needed] 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. However, it is noteworthy that Rosenberg et al. found that the sampled Pakistani populations are more genetically diverse than 15 Indian populations that were explicitly compared[2]

Use of genetic data for controversial non-medical purposes

Use of HGDP genetic materials for non-medical purposes purposes not agreed to by indigenous donors, especially purposes that create possibilities for human rights violations. An example can be found in the paper "Developing a SNP panel for forensic identification of individuals", Kidd et al., 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.

References

  1. ^ Model Ethical Protocol for Collecting DNA Samples, North American Regional Committee, Human Genome Diversity Project, published in the Houston Law Review 33(5): 1431-1473 (1997, with the addition of the first title word "Proposed")
  2. ^ [1] - however, see [2]

External links


The Human Genome Diversity Project (HGDP) was started by Stanford University's Morrison Institute and a collaboration of scientists around the world. The resulting data sets have often been cited in papers on such topics as population genetics, anthropology, and heritable disease research. The project has noted the need to record the genetic profiles of endogenous populations. These efforts have been countered by accusations of racism. The HGDP is in no way related to the Human Genome Project, and has attempted to maintain a completely distinct identity.

Contents

Studied populations

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:

Africa  Asia Native America  Europe Oceania
BantuWestern Asia Central & South AsiaEastern AsiaColombianAdygeiMelanesian
BiakaBedouinBalochiKhmerMongolaKaritianaBasquePapuan
MandenkaDruzeBrahuiDaiNaxiMayaFrench 
Mbuti pygmy BurushoDaurOroqenPimaNorth Italian 
Mozabite HazaraHan (North China)SheSuruiOrcadian 
San KalashHan (South China)Tu Russian 
Yoruba MakraniHezhenTujia Sardinian 
  PashtunJapaneseXibo Tuscan 
  SindhiLahuYakut   
  UyghurMiaoYi   

Potential benefits

According to the Morrison Institute, diversity research may yield new data on various fields of study ranging from disease surveillance to anthropology. HGDP scientists have argued that in order to gain a full assessment of human development scientists must engage in diversity research. They state that that is why research needs to be conducted as quickly as possible before small native populations such as those in South America become extinct.

Another benefit of genomic diversity mapping would be in disease research. Diversity research could help explain why certain ethnic populations are vulnerable or resistant to certain diseases and how populations have adapted to these vulnerabilities (see race in biomedicine).

Potential problems

Denouncing the project since its outset, some indigenous communities, NGOs, and human rights organizations have objected to the HGDP's goals based on perceived issues of scientific racism, colonialism, biocolonialism (patenting), informed consent and the prospect of biological warfare.

Racism

The Action Group on Erosion, Technology and Concentration (ETC Group) has been a major critic of the HGDP, speculating that issues of racism and stigmatization could occur should the HGDP be completed. One major concern with the research project that they have put forward is been the potential for racism in certain countries resulting from HGDP data. They feel that when governments are armed with genetic data linked to certain racial groups, those governments might deny human rights based on this genetic 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.

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. 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.

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? These questions are specifically addressed by the HGDP's "Model Ethical Protocol for Collecting DNA Samples".[1]

Patenting

With the rise of the biotech industry, the commercialization and patenting of genetic data could have serious implications for indigenous people. Profit motivation makes these populations extremely vulnerable to exploitation.

Biological weapons

Another concern with the HGDP has been the threat of racially targeted biological weapons from the project.[citation needed] Since the project will identify genes that tend to conform to specific racial groups, many[who?] 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. However, it is noteworthy that Rosenberg et al. found that the sampled Pakistani populations are more genetically diverse than 15 Indian populations that were explicitly compared[2]

Use of genetic data for controversial non-medical purposes

Use of HGDP genetic materials for non-medical purposes purposes not agreed to by indigenous donors, especially purposes that create possibilities for human rights violations. An example can be found in the paper "Developing a SNP panel for forensic identification of individuals", Kidd et al., 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.

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.

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 is continuing.

References

  1. ^ Model Ethical Protocol for Collecting DNA Samples, North American Regional Committee, Human Genome Diversity Project, published in the Houston Law Review 33(5): 1431-1473 (1997, with the addition of the first title word "Proposed")
  2. ^ [1] - however, see [2]

External links


Genealogy

Up to date as of February 01, 2010

From Familypedia

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.

Contents

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 NGOs) 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:

Africa  Asia      Europe
Bantu  Ctrl/South Eastern Asia    Adygei
Biaka  Balochi Cambodian Mongola    Basque
Mandenka  Brahui Dai Naxi  French
Mbuti pygmy  Burusho Daur Oroqen  North Italian
Mozabite  Hazara Han (N. China) She  Orcadian
San  Kalash Han (S. China) Tu  Russian
Yoruba  Makrani Hezhen Tujia  Sardinian
   Pathan Japanese Xibo  Tuscan
   Sindhi Lahu Yakut  
Native America   Uyghur Miao Yi  
Colombian         Oceania
Karitiana  Western Asia      Melanesian
Maya  Bedouin      Papuan
Pima  Druze      
Surui        

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.

External links

This page uses content from the English language Wikipedia. The original content was at Human Genome Diversity Project. The list of authors can be seen in the page history. As with this Familypedia wiki, the content of Wikipedia is available under the Creative Commons License.

This article uses material from the "Human Genome Diversity Project" article on the Genealogy wiki at Wikia and is licensed under the Creative Commons Attribution-Share Alike License.

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