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A Massive Project for the Benefit of Mankind:
A Look at the Human Genome Project

Scientists are taking medical technology to new heights as they race to map all of the genes, nearly 100,000, in the 23 chromosomes of the human body. Along the way, they hope to understand the basis of, and maybe even develop methods of treating certain genetic diseases, such as Alzheimer’s and Muscular Dystrophy. They plan to do this by identifying the DNA sequence of an abnormal gene in which a disease originates and comparing it with the data of a normal or healthy gene. The entire research project is entitled "The Human Genome Project."

Most of the labs and researchers are located in France and the United States. The project started in 1990 and was slated to take 15 years and cost $3 billion in U.S. money for the entire project coming to roughly $200 million per year. Federal funding for the project is nearly 60% of the annual need. This has created some funding problems for the project. There also have been technological advances and discoveries that have helped to speed up the project. This automation may help to reduce the cost and help the project to meet its objectives ahead of schedule. The project was estimated to have detailed maps of all of the chromosomes and know the location of most of the human Genes by 1996.

Researchers have successfully located the gene and DNA sequence for Huntington’s Disease on Chromosome 4 and have created a genetic test to determine if a person carries this gene. "The child of a person with Huntington's has a 50% chance of inheriting the gene, which inevitably leads to the disease." Once an individual acquires the gene, it is only a matter of time before they acquire the disease. Because the medical costs of treating such persons in terminal illnesses are extremely high, insurance companies who want to stay in business see this genetic test, and others like it, as an opportunity to screen prospective clients for the probability of such diseases. Some people feel that this information gives insurance companies unfair advantage over those covered by medical insurance and point out that release of genetic information to insurance companies puts a severe disadvantage on the person who is screened, as well as violates the patients right to privacy. If this genetic information is not safeguarded as confidential for the patient’s and doctor’s knowledge alone, then the patient can be labeled as undesirable and the patient may not be able to receive insurance coverage at any price. This also brings up other ethical questions. "Does genetic testing constitute an invasion of privacy, and would it stigmatize those found to have serious inborn deficiencies? Would prenatal testing lead to more abortions? Should anyone be tested before the age of consent?"
Obviously, many genetic advancements are to come of this research. One biotechnology that will benefit from genetic testing is genetic engineering. It too, may have many social implications depending on what is created from such experimentation.

Gene Therapy is one "spin-off" that has greatly benefited Gene-mapping. It utilizes genetic engineering to treat genetic disorders by "introducing genes into existing cells to prevent or cure diseases" . Most of the methods are still in the experimental stages and have yet to be approved by the FDA. One example would be in a proposed treatment for a brain tumor. Scientists would take a herpes gene and splice it in to a nonvirulent virus. Viruses and liposomes have an uncanny ability to navigate through cell membranes. The virus is then placed into a laboratory animal to reproduce itself, and after reproduction, is injected into the human’s brain tumor. The virus is supposed to invade the tumor cells. Thus, the herpes enzyme will render the tumor vulnerable to drugs used to cure herpes, killing the tumor, the virus, and the animals' cells used to manufacture the virus.

With this and other ideas springing out from the "medicine cabinet", many researchers are optimistic about the results of their research. There is also a direct correlation of the sequencing of genes and production of effective drugs on diseases which may have different strands of defective genes, such as Alzheimer’s. Locating these genes would be crucial to synthesizing a product to affect that specific location in the gene. The director of the gene-therapy program at the University of Southern California, Dr. W. French Anderson states, "Twenty years from now, gene therapy will have revolutionized medicine. Virtually every disease will have it as one of its treatments." Such an impact on medicine would take much longer to occur with "hit and miss" tactics, rather than methodically mapping out the blueprint for the body.

So whether we, as society, want to go forward in this research slowly, or with blazing speed, scientists will go forward and do what they set out to do. The fact that this research will benefit humanity is resounding, we just need to remember to handle our findings in such a manner that benefits all of society, not just those on top of the economical food chain. Also, persons should be able to decide for themselves if they can handle knowing what their genetic flaws are. Sometimes knowing you will eventually be afflicted by a disease can be as emotionally devastating as actually having the disease.

Some states have already enacted laws guarding the rights of individuals genetically tested. The problem is that most only cover certain procedures and not all of the testing. Whatever way we govern such testing, we have to realize, will be inefficient by most standards, as government always is, in complicated situations. I feel that if genetic information should be public knowledge, then every country using this genetic concept should provide "blanket insurance" coverage for everyone at the same rate. This would be the only fair action that would have the common person’s interest in mind, although it is a socialist concept, people would not be discriminated against and it would put everyone on a level playing field. Since I don’t see a comprehensive health care plan in our horizon, we should consider making personal genetic information excluded from insurance companies, the government, etc., except for the actual treatment of the patient, which was the original reason that these tests were created. The reason that I feel genetic information should be totally excluded from insurance companies is this: Once genetic testing becomes widely available, it would be easy for an insurance company to require people to submit to a genetic test before they could be covered. If the person applying is found to be unfit, it could go on his or her insurance "medical report", such as a "credit report", which would blacklist that person from ever getting coverage. Obviously there is a need for governmental laws to prevent this from happening. No one can control what genes they will get, and just because you have "bad" genes doesn’t mean you are a "bad" person, thus no one should be discriminated against due to these "weaknesses". I personally feel that the Human Genome Project is a great undertaking intended for the benefit of mankind.

There are many advances that have been made in treatments as well as the creation of various machines that automate the process of gene mapping. Machines that may be used to automate the study of other organisms. I just don’t trust the motives behind the insurance companies who could unduly benefit from such testing. I feel that the individual’s right to privacy should remain paramount, and that there should be laws set in motion to prohibit a person from being discriminated against because of genetic predisposition.

Bibliography
Bloch, Hanna; Dan Cray and Christine Sadlowski: "Keys to the Kingdom" and "Do You Want to Know If the News Is Bad," Time Special Issue (vol. 148 No. 14, Fall 1996) pp. 24-29.
The Concise Columbia Encyclopedia is licensed from Columbia University Press. Copyright © 1995 by Columbia University Press. All rights reserved.
Duby, Jean-Jacques: "Genetic Discrimination," Science (vol. 270, Nov. 24, 1996) pg. 1282-3.
Holmes, Bob: "Blueprint for Brewer’s Yeast," New Scientist (vol. 150, Apr. 27, 1996) pg. 11.
Hudson, Kathy L.: "Genetic Discrimination and Health Insurance: an Urgent Need for Reform," Science (v. 270 Oct. 20, 1995) p 391-3.
Hutton, Richard: "Bio-Revolution: DNA and the Ethics of Manmade Life," New York: New American Library.
Lewis, John: "Automation System Quickens Gene Mapping," Design News (vol. 51, July 8, 1996)
Pennisi, Elizabeth: "New Gene Forges Link Between Fragile Site and Many Cancers," Science (May 3, 1996) pg. 649.

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