A Massive Project for the Benefit of
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 Alzheimerís 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
Huntingtonís 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 patientís and
doctorís 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 humanís 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 Alzheimerís. 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
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 personís 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 donít 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 doesnít 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 donít trust the motives
behind the insurance companies who could unduly benefit from such
testing. I feel that the individualís 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
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
Duby, Jean-Jacques: "Genetic Discrimination," Science (vol. 270, Nov.
24, 1996) pg. 1282-3.
Holmes, Bob: "Blueprint for Brewerís 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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