Human Genome Project
The Human Genome Project (HGP) is an international effort to map out the human chromosomes, pinpointing the location and details of all the genes and interconnecting segments. The term genome represents an individual's total genetic material, those chemical segments which control the activities of cells and human heredity. The HGP, simply stated, aims to identify the DNA sequences that determine each organism's characteristics.
The first stirrings of the HGP in the United States began in the mid-1980s. By 1990, a much more ambitious research program had taken form, including similar research projects in the United Kingdom, Denmark, France, Germany and Italy. The overall mapping and sequencing efforts are coordinated through an international body called the Human Genome Organization, or HUGO.
The Human Genome Project has numerous implications. On the one hand, further understanding and mapping of human genetics could lead to the development of new therapies for hitherto incurable diseases and new ways of manipulating DNA. There are over 3,000 known inherited diseases, and we've only identified the responsible gene for a mere 3% of them. On the other hand, it brings to mind all sorts of potential dangers and ethical questions. Some scientists and politicians have raised the concern that the ability to generate information has been pursued without adequate attention to its ethical implications.
One potential danger was signalled by the U.S. National Institute of Health's attempt to patent complementary DNA in 1991. While patenting is touted as a necessary financial incentive for research initiatives, it also restricts access to the information generated and to the use of those discoveries. That places a great deal of control in the hands of the private firm that funded the research, and may limit the spread of real benefits which result from the discovery. When the product being patented is human DNA, it also rekindles the debate over patenting life forms.
While patenting may restrict access to some information, other critics worry that the availability of genetic information may have serious privacy and equity effects. Most states do not have laws protecting citizens against the misuse of genetic information by, for instance, employers and insurers. In the absence of effective legal remedies, genetic testing may be used to bar people from employment or insurance coverage. Insurers may even make mandatory testing a requirement for coverage. Also, existing laws may not be adequate to protect peoples privacy: whereas there may be some protection from unwanted testing of an individual, genetic information about that same individual may be accurately predicted by tests on relatives. Privacy protection has not kept pace with genetic science.
Within the budget for the HGP in the United States is a small allocation (3% of its total) towards study of the ethical, legal and social implications (ELSI) of the project. The ELSI Working Group is charged with studying the issues of fairness, privacy, delivery of health care, and education. However it only has the power to make recommendations to policy makers in these areas.
Beyond these questions lie deeper ethical considerations. What are the implications and dangers of changing genetic structures? Who decides what are good genes and what are bad genes? The Human Genome Project has left those broader questions unanswered as it races towards the creation of a genetic road-map.
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