The success of the Human Genome Project also poses potential societal problems. Some genetic disorders will be detectable long before there will be treatments available for them. Controversy could also arise over reproductive issues. For example, people may consider terminating pregnancies for reasons of genetic makeup, or if there is social pressure to limit reproductive rights or genetic grounds. Issues of genetic discrimination and confidentiality in the insurance industry and employment also must be addressed.
In 1988, the Human Genome Organization (HUGO) was established, which facilitates the international scientific effort. Canada, France, Japan, Italy, and the United Kingdom now have programs for genome research, and the United Nations Educational, Scientific, and Cultural Organization facilitates and promotes the inclusion of developing countries in international genome research.
The actual overlay of the Human Genome Project is enormous. Mapping and sequencing was initially projected to take 15 years, and be completed in 2005 at an estimated cost of three billion dollars. However, recent reports state that progress has been more rapid than previously expected. After mapping and sequencing are complete, many years will be needed to completely identify all the genes and determine the format of gene expression.
After mapping is complete, the DNA must be sequenced to determine the order of all the nucleotide bases of the chromosomes, and the genes in the DNA sequence must be identified. In all aspects of the project, a major focus has been developing instrumentation to increase the speed of data collection and analysis.
Other issues pertain to protection of personal information of genetic history. People have been denied insurance coverage because a family member has a genetically inherited disorder. Although much of this information will have a positive impact on society, other uses may increase discrimination, restrict reproduction, affect employment and insurance coverage decisions, and cause personal unhappiness to those who receive genetic information for which they are unprepared. Certain legislation may be necessary to protect individuals with known genetic problems and/or disorders. Also laws may need to be implicated to protect the confidentiality of genetic information. In 1990, the Americans with Disabilities Act, which prevents some kinds of genetic discrimination, was enacted. By July 1994, all companies with 15 or more employees had to comply with this federal law. However, some issues remain unresolved. For example, although people with a genetic disorder are protected, what about the family of a carrier of a genetic disorder, or the person who has discovered that he or she will get a debilitating or even fatal disease in the future.
Insurance companies may worry that clients may withhold information about a genetic problem and obtain additional coverage. Also, often a person's medical information is released to employers. This could lead to discrimination in the work environment. There are many issues that will come to light upon the completion of this project, and it will be very important that each is addressed in a very careful manner.
The NIH and DOE have established a working group to study privacy issues from several perspectives. Guidelines for genetic databanks must be drafted to protect the right to privacy. State forensic laboratories store blood or other body fluids of convicted felons from which they obtain genetic "fingerprints" for later use. The Defense Department maintains a bank of tissue samples from members of the armed forces for use in identifying those killed in the line of duty. Here again, genetic information could be obtained without a person's knowledge or consent. No laws are in place to protect the individual's genetic privacy.
I would like to first address one issue that I did not in the body of this report that would be one of religion. I understand the huge benefits of the results of this project, however, when does science go too far? Disease and death are part of a natural and healthy ecosystem. Some may say what right do we have to try to alter any part of this. If we continue to heal the sick and save the dying, our world may become so over-populated that other problems will develop.
On the other hand, I feel that the impact this will have on the human race will be a completely awesome, and overpowering benefit. The potential this will have for curing and developing vaccines for disease, and the understanding of the "human being," absolutely outweigh the negative factors. I do believe however that a certain level of education should begin to inform individuals about the project and the results to come, and perhaps fewer problems will result.
Some Other Useful Web Sites
| Center | Site |
|---|---|
| NIH Human Genome Program | http://www.nhgri.nih.gov/HGP/ |
| DOE Human Genome Program | http://www.er.doe.gov/production/ober/hug_top.html |
| Genome Database | http://gdb.org/ |