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The Ethical Implications of the Human Genome Project

Imagine that an enormous space-traveling rocket was under construction in Florida. Books and articles described the selection of the crew, the construction problems, and the likely cost. However, little attention was paid to its destination or mission after it arrived. This was not what happened, of course, when the Apollo project landed men on the moon for the first time. This analogy works very well in describing another large government-funded effort that is taking place in a different area today: the attempt to read the entire genetic DNA text of billions of characters that describes the heredity of a typical human being. This undertaking has been named the Human Genome Project.

This project is intended to teach scientists how the human body operates on its most basic level. With this knowledge comes a barrage of ethical, legal, and social implications that must be considered. James Watson, while head of the project, appropriated 3 percent of the projects funding for the study of these implications (Cook-Deegan 237). Although much information is being generated through this appropriation, it is surely not enough. It is thought that ethical guidelines must be determined as to what extent scientists, geneticists, and doctors will utilize this information.

The Human Genome Project is a worldwide research effort initiated by the National Institute of Health and the Department of Energy whose goal is to analyze the

structure of human DNA and to determine the location of the estimated 100,000 human genes. Along with this goal the groups are working on analyzing the structure and determining locations in the DNA of a set of model organisms. These model organisms, when studied, will provide the comparative information necessary for understanding the human genome (U.S. Dept. of Health and Human Services 1-3).

The basic data produced in this project is sent to electronic databases where the information is assimilated and made readily accessible to those who need it. It is believed that this information will be the handbook for biomedical science in the 21st century. It will be used to treat the 4000 plus genetic diseases and multifactorial diseases in which genetic disposition plays a role. Over 1 billion dollars has already been spent on this project, with 200 million dollars being reserved annually since the projects initiation in 1988. Throughout the project, the genetic technology will increase to assist with a wide range of biomedical and biological research, the costs will decrease, and applications of both the technology discovered and the information accumulated will be found in other fields (U.S.D.H.H.S. 4-8)

Today there are many controversies relating to gene therapy and the ethical implications of the Human Genome Project. These controversies are heavily debated upon and studied but ultimately have to be resolved by society. One such controversy is that of safety. It is currently unknown what effects the body will have upon the introduction of a new gene into it. Premature experimentation runs the risk of unleashing dangerous and irreversible mutations into the gene pool (Gorner 1). It is believed that through extended and meticulous testing on laboratory animals that an acceptable and safe procedure may someday be possible. Another controversy confronting society is abortion. With the enhanced ability to detect genetic disease an increase in the number of abortions and political hassle is sure to follow. The Illinois state legislature has shown a step in the right direction with their recent presentation of a bill that would forbid sophisticated prenatal testing unless it can be shown to be beneficial to the fetus. The third controversy involves body cell (somatic) therapy versus sex cell (germline) therapy. Body cell therapy affects only the patient. An example is the introduction of a new gene to reprogram a cancer to keep it from spreading. However, sex cell therapy involves changes in the sperm or egg cells of an individual. This version of gene therapy could cause changes in our species because the alterations are passed on from generation to generation (Gorner 2). Barbara Katz Rothman, a sociologist, says, In gaining the choice to control the quality of our children, we may rapidly lose the choice of simply accepting them as they are (Shapiro 160).

An additional controversy that has surfaced with the prospect of sex cell alteration is that of eugenics, which is the specific tailoring of the human gene. This ability to manipulate genes for medical purposes could lead to other applications. One of the most feared applications is that of the improvement of the human gene. Traits such as intelligence, physical prowess, character, and even ethnic type could be altered some day (Gorner 2). The most prospective utilization of eugenics is the possibility to eliminate disabilities from the gene. A body of thought does exist although, that believes that disabilities should not be avoided but rather accepted as a part of nature. We are not really willing to confront disability, says Mary Johnson, editor of The Disabilities Rag, What we really want is fewer and fewer disabled people. That is what really worries me (Shapiro 160).

Jeremy Rifkin is very likely the most visible and vocal opponent of all forms of genetic manipulation. Within his book entitled Algeny, he writes:

In all of humanity s past experience, living things enjoyed a separate, unique, and identifiable place in the order of things. There were always rabbits and robins, oaks and ostriches, and while human beings could tinker with the surface of each, they couldn t penetrate into the interior of any. Now, as we move from the age of pyrotechnology to the age of biotechnology, people are beginning to learn how to reorganize living things from the inside out . . . [This marks] a qualitative break with man s entire past relation with the living world (Shapiro 160-1).

Rifkin s opinion is that mankind s ultimate survival may be less important that what he sees as the integrity of the universe. His philosophy is often an attack on Darwinian thought. This position is shared by Creationists but not by the scientists most closely

concerned with evolution. In Mr. Rifkin s system the welfare of individual humans matters less than the sanctity of nature: in securing physical well being we must accept the human species as a technologically designed product. Most of the population, however, is positioned on the favor side. We judge human suffering to be an evil that outweighs considerations of what may or may not be natural. Although questions must be asked as to how far one would go to improve suffering . The genetic alteration of a fetus with spinal muscular atrophy, a disease that kills within 9 months of birth, sounds noble at least. Changes made in order to have a baby girl as opposed to a son, however, cannot be justified easily if at all (Shapiro 160-2).

As genetic research progresses tests will be developed to predict genetic diseases long before they can be cured. One problem that this presents is the end of health and life insurance as we know it. Insurance is designed to share costs in a manner that is proportional to risk. Smokers, pilots of private aircraft, and members of other risk groups

pay increased premiums to share these costs, and a concern arises as to how insurance companies will react to genetic testing (Shapiro 172). No test can be 100 percent accurate, but what insurance company would want to insure a client whose genetic makeup indicates the chance of developing debilitating diseases that would require extended medical stays? It has been suggested that programs be established outside of regular insurance to shield victims of genetically traceable disease form medical costs. Ultimately, society must create a balance between cost and compassion where both the genetically healthy and the sick can coexist (Shapiro 172).

As far as international ethics are concerned, there are 5 basic principles that underlie the consensus. These principles are autonomy, privacy, justice, equity, and quality. Autonomy-Genetic testing and the resulting information is highly personal. This information could be used to discriminate on socioeconomic grounds. This information is also predictive and probabilistic. Because of this, counseling has become a prerequisite to testing. A consensus also exists which limits genetic testing to tests which are medically therapeutic. These tests are determined by individual countries according to cultural, political, and social norms. Most of the testing is limited to individuals at high risk for serious disorders (Knoppers 2035).

Privacy-When dealing with genetic testing the respect for privacy and confidentiality is crucial. Some ethical guidelines prohibit communication to all 3rd parties without consent. Where employers and insurers are involved, the presence or absence of universal health care and Social Security shapes the current guidelines on genetic testing. Countries with universal health care recommend rejecting access to or direct testing by employers or insurers for life and disability insurance. Belgium has gone as far as to prohibit testing or access to genetic information by insurers in its Civil Code. A NIE-DOE report states that, Information about past, present, or future health status, including genetic information, should not be used to deny health care coverage or services to anyone. The same concerns arise in the area of genetic identity testing. In fact, France has passed legislation requiring court orders for such testing (Knoppers 2035).

Justice-The international community is united in its concern for vulnerable populations. Incompetent adults, minors, and future generations cannot make decisions by themselves when genetic issues are at hand. The members of society should be included in the decision making when possible. However, it is true that overprotection could make research impossible. Germline modifications need the most attention because of the intense desire for justice we must have for future generations. There must be prevention of eugenic uses of the technology until its implications are fully realized. In most cases it is totally prohibited. Austria, France, Germany, and Norway prohibit germline alteration by statute. It must be noted that we should take a more cautious approach and continue to discuss the technical and ethical aspects while we develop safeguards for this area of genetics(Knoppers 2035).

Equity- To many, genetic testing arouses a fear of social inequality. Testing could be linked to many things including financial considerations, the willingness to terminate a pregnancy, or the denial of social welfare benefits for the refusal to undergo testing. Another concern is the possibility of creating unequal burdens for minority ethnic groups when specific genes are more prevalent in 1 group over another (Knoppers 2035).

Quality- Finally, genetic testing requires accredited and licensed laboratories and personnel, professional oversight and monitoring, and ethical review. It is believed that without these, the science could not progress without members of society attempting to cash in for their own good(Knoppers 2036).

Although the Human Genome Project will present society with a wonderful gift to fight the genetic diseases that kill and cripple us in today s day and age, we must be very sure that we establish a firm ethical outline on which to base this gift. If we do not, we could be gift wrapping a Pandora s Box for the 21st century.


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