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UNIT
ONE The Human Genome Diversity Project (HGDP) Introduction
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We are all different, yet we are all the same. This idea is one of the most fascinating thoughts about the human condition. From the Basic Genetics Manual lesson, you know that every human individual’s DNA is 99.8% alike. In this way, if I take a sample of my DNA and compare it to a sample of your DNA, we will be the same for 998 base pairs of 1000 and we will be different only at two. However, because every cell in our body contains 6 billion base pairs of DNA, then the total amount of base pair differences between our genomes numbers in the millions. So because our DNA is 99.8% identical, we are very much alike, however, we are also different due to the large number of variations between our genomes.
Now if you compare your DNA with the DNA of one of your siblings, your genomes are likely to be more similar than 99.8% alike. However, if the DNA of a Native American Sioux Indian living in Oklahoma is sampled ad compared to the DNA of a member of the Arhuacos aboriginal Indian tribe in Australia, the comparison will likely be significantly less than 99.8% alike. This is where the Human Genome Diversity Project (HGDP) fits in. The HGDP is a research
project with the intention of providing a comprehensive study of
genetic diversity across varying human populations. The project
was proposed and planned in 1991 and began to function in 1993.
HGDP is mainly designed as a way to integrate the various and unique
ethnicities, populations, and communities of the world with the
information and data provided by the Human Genome Project (HGP).
How can the HGDP enhance the results of the HGP? The HGP has already mapped and sequenced every gene on the human genome and has published a single ‘consensus’ human genome. However, it would be wrong to think that humans all share a single copy of the human genome, repeated again and again in every individual. In actuality, there are as many individual genomes as there are human beings. The HGP has basically combined and averaged the human genomes of about 200 anonymous individuals in forming its version of ‘the human genome.’ In reality, this genome should be known as the “western European human genome” because these anonymous individuals in the study are mostly United States residents and employees of the NIH, and thus many of these individuals probably have European ancestry. Furthermore, since the DNA samples contain no identifiers for ethnicity or any other background, the HGP will not be able to provide results or data about human genetic variation. In order to understand human genetic variation throughout and across the globe, a large number of individuals from varying populations and communities must be sampled. The HGDP proposes to do exactly this by collecting genetic material from 400 to 500 geographically isolated or culturally unique populations. The obtained genetic material will include blood, hair root samplings, and cheek cell scrapings. In the end, the HGDP hopes to demonstrate where on the human genome the studied populations differ from each other and where they are the same.
Primarily the HGDP is interested in documenting and tracing the history and evolution of the human genome in varying populations. By laying-out and comparing DNA samples from various communities, it will be possible to reconstruct the relationships and origins of the different human populations.
Theologically, does this mean that we are
all ultimately made in the image of the same God? What other theological
issues are raised if we are all shown to be ‘cousins’?
Even though the HGDP may have biomedical goals, it is important to note that the HGDP has a non-commercial origin and has a minimal likelihood that its work would have any commercial value. The HGDP does not intend to collect medical data and the only data that is recorded is the ethnic background information on the participant. Without extensive physical data on the participant, it is extremely difficult to produce commercially valuable biomedical data. The HGDP may seem like it has been troubled from the day it came together. A tremendous slew of moral, cultural, political, legal, and social issues have been raised from the day of its birth and even today, a lack of results and funding have seriously inhibited the progression of the HGDP. From day one, the HGDP has been accused of scientific racism because its data can someday be used as a basis for discrimination or racial stereotyping.
The possibility that the HGDP is an effort to depict the inferiority of certain races by scientific experimentation is a large concern on behalf of many minority families. These families are afraid of being looked at as less important or less powerful due to their genetic differences.
To make things clear, however, the HGDP study is not racist in its design and plan. The HGDP must sample varying populations throughout the world in order for its statistical data to be legit and accurate. Otherwise, if the HGDP just studied a small number of populations, its resulting data would be biased and, like the HGP, would not represent human diversity throughout the globe. Of course, our world is not perfect and it is possible to use the data of the HGDP to discriminate, abuse, exploit, or injure a certain population or race. However, in this way, any study that attains information about a specific community or race is also racist. For example, is a city census count a racist study because it provides geographic data on various ethnicities?
First you took our land, then our bodies and
now our genes. This is a common cry by many American indigenous
groups fighting against the HGDP. This cry is used as an accusation
that the HGDP is a vehicle for biopiracy and biocolonialism. David
B. Resnick, in Politics and the Life Sciences, makes the analogy
that “just as Western nations have extracted minerals and other
resources from non-Western nations and communities for the betterment
of Western nations, the HGDP would extract genetic resources and
capitalize on them.” In this way, the HGDP is viewed as a sort
of ‘vampire project’ that is basically a moneymaking machine
which is profiting huge amounts of money from their gathered data
on genes. Further grievances by indigenous people can be seen at
(www.indians.org/welker/genome.htm).
Basically, researchers should inform their subjects about the design and goals of the HGDP, the risks and benefits of the project, and the reasons why their own genetic sample would be valuable to the project. Furthermore, key practical questions that should also be answered respond to: what biological materials will be stored? Who will manage access to these materials? What about confidentiality of the collected samples? Researchers should remember not to treat the indigenous and ethnic people that are being studied simply as lifeless objects. Researchers should know that they are not working on a certain population, but rather working with the population to produce the most thorough and accurate data. In this way, scientists of the HGDP should learn to respect the cultural and spiritual life of their subjects. Do you feel that this sort of verbal explanation of the HGDP and its promises is enough to quiet the opposition? Even though the results of the HGDP may, in the long run, provide countless benefits to the human species, many groups that are being studied respond more positively to practical improvements that the researchers might bring. For example, Dr. Carol Jenkins has been studying the Hagahai tribe of indigenous people to help contribute to the HGDP and the following speech is from a Hagahai tribe leader describing her treatment of the tribe: “Carol is a good person and she looks after our interests well. She helps us with many things. For example, she helps us find our community health workers and she helps with our aid post. She sends us medicine, helped us get a solar refrigerator, and many other things.” Unfortunately, what Dr. Jenkins has done is seen as exceptional treatment of subjects, rather than the commonplace treatment of subjects by the HGDP scientists. More recently, a few researchers have successfully set-up district nursing units for the impoverished communities that they are studying. This trend of assisting and helping the studied communities has shown to help the HGDP collect future accurate data. Some people may see what DR. Jenkins has done as a sort of dirty bribery in order to persuade the Hagahai people into being cooperative subjects for data collection. What do you think? Kari Stefansson has given his Icelandic subjects a different type of incentive to participate in his study. Stefansson promises that any drugs developed from his project results will be given free of charge to Icelanders. The truth about the HGDP progress Since its rapid start in 1993, the HGDP has seemingly been stuck in its planning stages for the past 9 years. China and Southwest Asia are the only two regions that have collected significant successful data. The HGDP still has no central post or database to hold and analyze any collected results. Overall, the HGDP has seen no widespread success because of a large lack of funding. The Chinese Human Genome Diversity Project (CHGDP) has been collecting cell lines from its official ethnic groups and has begun preliminary analysis of its data. The CHGDP has shown a distinct genetic difference between northern and southern Chinese ethnicities. Furthermore, the study has reached the conclusion that the majority of the current gene pool in East Asia originates from modern humans in Africa.
On a positive note, in collaboration with a French group, the HGDP recently has made the DNA from about 1000 cell lines taken from populations across the globe available to researchers.
Davis B. Resnick, in Politics and Life Sciences, writes that “the proper course of action is to provide the project with sufficient funds to scrutinize and analyze all aspects of this project, to continue a dialogue with possible study populations and developing nations, and to develop ethical guidelines for researchers.” Basically, the project must be put on temporary hold and its researchers and organizers must all gather to redefine their goals and construct a unified plan for the HGDP in light of its current problems and issues. Next, the HGDP must focus and concentrate its efforts into finding funds and support for their cause. When this has occurred, a more unified, better funded, and more knowledgeable force can help guide the Human Genome Diversity Project into success. Cavalli-Sforza, L. Luca (1998). “The Chinese Human Genome Diversity Project.” Proceedings of the National Academy of Sciences of the United States 95 (20): 11501-11503. Committee on Governmental Affairs United States Senate (1993). Human Genome Diversity Project. U.S. Government Printing Office: Washington DC, 1993. Dodson, Michael and Robert Williamson (1999). “Indigenous Peoples and the Morality of the Human Genome Diversity Project.” Journal of Medical Ethics 25: 204-208 Dukepoo, Frank C. (1998). “The Trouble with the Human Genome Diversity Project.” Molecular Medicine Today 4 (6): 242-243. Greely, Henry T. (2001). “Human Genome Diversity: What About the Other Human Genome Project?” Nature Reviews Genetics 2: 222-227. Marks, Johnathan (1998). “The Trouble with the Human Genome Diversity Project.” Molecular Medicine Today 4 (6): 243. Resnick, David B. (1999). “The Human Genome Diversity Project: Ethical Problems and Solutions.” Politics and Life Sciences 18 (1): 15-23.
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