The Ethics of Genetic Testing
The Goal of the Human Genome Project is to obtain genetic mapping information and to determine the complete sequence of all human DNA by the year of 2005. The project started in 1990 and 180 million dollars are being spent on it annually. This adds up to a total of over 2 billion dollars for the 15 year budget. Of this 2 billion dollars budgeted, 5% is spent annually on the ethical, legal and social issues. This report focused on some of these issues.
Before discussion of the ethical, legal and social issues can be successful, some background information is needed. For example, why is the goal of mapping the human genome important? Who is going to benefit or at least be affected by this new information?
Dr. Francis Collins, the current director of the Human Genome Project believes there are many benefits. Not surprisingly, Collins believes the money being spent on this project is well worth it. Collins believes the project has great potential to relieve suffering and also cut back on long term expenses (Collins, 1996).
These suffering and spending reductions are predicted to occur as more genetic diseases are located. Genetic disorders can be divided into 2 broad groups:
1. Genetic predisposition disorders: those in which the presence of a gene confers an increased tendency to develop a certain disorder. The disorder may or may not develop depending on a variety of associated personal and environmental factors such as geographic location, diet, exposure to harmful chemicals or toxins, exercise habits etc...
2. Environment independent disorders: Involve a determining force so overwhelming that the disorder is expressed in a predictable manner without environmental interaction
In the first type of disease, through genetic diagnosis the persons can learn what environmental factors they should work to avoid. In the second type of disease, the person can have regular checkups to increase the likelihood of an early diagnosis and therefore start early treatment. In both cases, the person's suffering and society's expenses can likely be reduced. Generally, early detection increases the likelihood of successful treatment which in turn is likely less expensive than the development of a "full-blown" disease. With this said, I found a contradiction in Business Week magazine that showed the costs of screening for cystic fibrosis created more of an expense than treating the disease (Krohn, 1995). It stated that the estimated lifetime medical costs for someone with CF is around $200,000 whereas the cost of each test was more than $200. This calculation puts the cost of avoiding one CF birth at more than 1 million dollars.
David Magnus brings up the broader issue of allocation. In an article entitled Gene Therapy and the Concept of Genetic Disease he writes:
"consideration of the main causes of death, including cancer, leave open the possibility that emphasis on gene therapies is not the best...