And now:Ish <[EMAIL PROTECTED]> writes: From: [EMAIL PROTECTED] Source: <A HREF=" http://dailynews.yahoo.com/headlines/sc/story.html?s=v/nm/19990629/sc/health_ genes_2.html ">http://dailynews.yahoo.com/headlines/sc/story.html?s=v/nm/19990629/sc/health _genes_2.html</A>==================================================== USES AND ABUSE OF GENOMIC INFORMATION I. HOW THE GENOMIC SEQUENCING PROGRAM BEGAN: In 1984 the Department of Energy (DOE), interested in studying inherited mutations caused by the use of the Atomic Bomb in Hiroshima, set up a research program. The programs aim was to advance the DNA sequencing technology, set up sequence analysis by computer, and map human DNA Fragments. The scientists argued that the focus of the project should be geared toward finding causes and cures for cancer rather than tracing inherited mutations. They also stated that the DOE was not an appropriate agency for the task of sequencing the human Genome. After the meeting, several Foreign Scientists returned to their home to start a Human Genome project in their own countries. These Countries include: Italy, United Kingdom, and the Soviet Union. In the mean time, the US Congress observed the debate and noted that the discourse did not focus on whether or not the research should be done, but instead emphasized how and who should manage the project. The Congress also agreed that the focal point of the project should be readjusted and that molecular biologists should be responsible for the advancement of DNA sequencing technology. Therefore, in the early 1990's The Nation Institute of Health (NIH) and the DOE submitted a joint five year research plan. The plan included provision for a committee designed to investigate social, ethical, and legal implications (ELSI) of the Genome project. (1) II. USE OF GENETIC INFORMATION A. Genetic Testing >From an ethical standpoint the questions that arise from the data acquired out of the Genome Project can be grouped into three categories; the use of genetic information concerning individuals and differing populations manipulation of the Human Genome, and the understanding of ourselves. Information that can be gathered from the Genome carries with it a large amount of responsibility, not only from an individuals point of view, but also form a societies' point of view. An example of such responsibility comes from societies experiences with the ability to test for Huntingtons Disease and Cystic Fibrosis (CF). Huntingtons Disease manifests itself when the victim is in his or her 30's or 40's by causing uncontrolled movements and dementia. Up until 1991, those that are tested for Huntingtons Disease before manifestation of the symptoms, were given counseling before and after the tests. Experience has shown that the psychological burdens of know whether or not there is a propensity for such a disease can be immense. The second example of the responsibility of using Genetic testing comes from the example of CF. The ability to screen for CF provokes some ethical concerns. One of these concerns include questions of accuracy. Only 68% of the CF mutations are well characterized. That means that even after being screened a child may still develop CF. B. Genetic Testing in the Work Place The first example of testing in the work place was in 1938. and 3) Haldane noticed that not all workers developed symptoms of disease after being exposed to toxic substances and deduced that there must be a genetic basis for the random sickness. Based on this hypothesis, he deduced that Genetic screening would be important to insure public health. The technological improvements of the time, however, would not allow the testing to be performed. Since then there have been several documented cases in which Genetic screening has occurred in the work force for exclusionary reasons. There are four recognized reasons for diagnosis, research, information, and exclusion. Only in the case of exclusion does in ethical dilemma exists. Presently it is believed that Genetic tests in the work force must be voluntary, and non exclusive. If a person is genetically susceptible to hazard in the working environment then that person should be able to exercise the right to choose whether or not the risk of working in that environment will be taken. Mandatory testing and exclusion poses sever ethical problems. (2) C. Genetic Testing and Insurance There are two reasons that Insurance Companies may try to use Genetic Testing. First, individuals are using genetic tests to determine whether or not they are at risk of developing genetic diseases. Those that have a propensity of certain diseases are purchasing large amounts of insurance. Second, companies that use Genetic Tests are able to obtain low risk clients and charge lower rates than those companies that do not test. While individual testing may lead to preventive measures, Genetic discrimination will nullify any benefits that may be gained from the Genome Project. Genetic Testing has been used to deny coverage to African Americans who were carriers of the Gene for Sickle Cell Anemia in the 1970's. Additionally, there are documented cases of Genetic Discrimination of healthy individuals that carry the Gene for Huntington's Disease. "In a recent survey of people with a know Genetic condition in the family, 22% indicated that they had been refused Health Insurance Coverage because of their Genetic status, whether they were sick or not." (2) and (3) 1. Watson, James Dewey and Coo-Deegan, Robert Mullan, Origins of the Human Genome Project, Faseb, Bol 5, #1, PG 8-11, 1991. 2. Murray, Thomas H., Ethical Issues in Human Genome Research, Faseb, Vol. 5, #1, Pg 55-60, 1991 3. Kathy L. Hudson, Karen H. Rothenberg, Lori B. Andrews, Mary Jo Ellis Kahn, and Francis S. Collins, Genetic Discrimination and Health Insurance: An urgent need for reform, Science, Vol. 270, PG. 391-393, 1995 Reprinted under the fair use http://www4.law.cornell.edu/uscode/17/107.html doctrine of international copyright law. &&&&&&&&&&&&&&&&&&&&&&&&&& Tsonkwadiyonrat (We are ONE Spirit) Unenh onhwa' Awayaton http://www.tdi.net/ishgooda/ &&&&&&&&&&&&&&&&&&&&&&&&&&
