The Human Genome Project

Does the Human Genome Project effect the moral standards of society? Can the information produced by it become a beneficial asset or a moral evil? For example, X chromosome markers can be used to identify ethnicity. A seemingly harmless collection of information from the Human Genome Project. But let’s assume this information is used to explore ways to deny entry into countries, determine social class, or who gets preferential treatment. Whether or not this type of treatment is acceptable to a moral society remains to be seen.

The major events of genetic history are important to understanding the Human Genome Project. Genetics is the study of the patterns of inheritance of specific traits. The basic beginnings of genetic history lay in the ancient techniques of selective breeding to yield special characteristics in later generations. This was and still is a form of genetic manipulation by “employing appropriate selection for physical and behavioral traits”(Gert, 93). Gregor Mendel, an Austrian monk, completed experiments on garden peas so as to establish the quantitative discipline of genetics.

Mendel’s work explained that the inheritance of traits can be stated by factors passed from one generation to the next; a gene. The complete set of genes for an organism is called it’s genome. A genome creates traits that can be explained due to the inheritance of single or multiple genes affected by factors in the environment. Mendel also correctly stated that two copies of every factor exists and that one factor of inheritance could be dominate over another. The next major events of genetic history involved the discovery DNA (deoxyribonucleic acid).

DNA is a double helix of amino acids and proteins that are encode the blueprint for all living things. DNA was found to be packed into chromosomes, of which 23 pairs existed in each cell of the human body. DNA was also found to be made of nucleotide chains consisting of four amino acid bases known as Adenine, Cytosine, Thymine, and Guanine (A, C, T, and G). Any ordered pair of bases makes a sequence. Sequences are the instructions that produce molecules and proteins for cellular structure and biochemical functions.

A marker is any location on a chromosome where inheritance can be identified and tracked. Markers can be expressed areas of genes (DNA) or some segment of DNA with no known coding function but an inheritance can still be traced. It is these markers that are used to do genetic mapping. By the use of genetic mapping, isolated areas of DNA are used to find if a person has a specific trait, inherent factor, or any other numerous genetic qualities. “Research and technology efforts aimed at mapping and sequencing large portions or entire genomes are called Genome projects”(Congress, 202).

Genome projects are not the effort of a single organization, but instead are groups of organizations working in government and private industry throughout the world. The controversies surrounding the Human Genome Project can be better explained by explaining the structural and moral aspects of the project. Begun in 1990, the US Human Genome Project is a 15-year effort coordinated by the US Department of Energy and the National Institutes of Health.

It’s purposes are to identify all the estimated 80,000 genes in human DNA, determine the sequences of the 3 billion chemical bases that make up human DNA, store this information in databases, and develop tools for data analysis. The objectives of the Human Genome Project are carried out by organizations such as the National Institutes of Health, Howard Hughes Medical Institute, and various other private organizations. These organizations all have two shared objectives, placing “new methods and instruments into the tool-kit of molecular biology” and “building research infrastructure for genetics”(Murphy, 17).

Any attempt to resolve moral issues involving new information from the Human Genome Project requires direct, clear, and total understanding of common morality. Webster’s Dictionary defines morality as ethics, upright conduct, conduct or attitude judged from the moral standpoint. It also defines a moral as concerned with right and wrong and the distinctions between them. A moral theory is the attempt to explain, justify, and make visible “the moral system that people use in making their moral judgments and how to act when confronting a moral problem” (Lee, 34) This theory is based on rational decisions.

With this in mind, the moral system must be known by everyone who is judged by it. This leads to the rational statement that “morality must be a public system” (Lee, 34) The individuals of the public system must know what morality requires of them, and the judgments and guidelines made must be rational to them. Just like any game, the players play by a set of rules and these rules dictate how the game is played. When rules are broken penalties are enforced by the other players, according to the rules.

However, if everyone agrees to change the rules then the game continues without any penalties. Therefore, “the goal of common morality is to lessen the amount of harm suffered by those protected by it” (Lee, 35) and it is constrained by the knowledge and need to be understood by all it applies to. Justified violations also exist in common morality. Just like in the game, a change in the rules causes acceptance. Morality in every instance can be viewed not as an evil by the public perception but as a decision backed by common morals.

Based on the pattern of common morality, the issues of genetic race and class distinction or any other controversies involving the Human Genome Project can be put to a set of common moral standards. Just like the moral standard that says killing is wrong but justifiable in self-defense, the Human Genome Project can be argued along the same line of moral discussion. The justifiable violations that genetic information is based on, depends on the common morality of the public system which, in turn, is based on the common beliefs and distinctions between right and wrong.

Thus the moral dilemma of genetics is simple; will it be an asset or an evil to the individuals public perception of common morality based on the right and wrong of the information? This answer is based on the societies structure. Our particular social structure is largely based on modern medicine. From this it is reasonable to assume that the Human Genome Project is largely accepted by the general populous. So it may be accepted, but is this acceptance propitious? Isn’t there a point where the morality of mapping a persons entire physical and mental character becomes a violator of the personal privacy we all reserve the right to?

That is exactly what the ELSI branch of the Human Genome Project is all about. The US Department of Energy (DOE) and the National Institutes of Health (NIH) have devoted 3% to 5% of their annual Human Genome Program budgets toward studying the ethical, legal, and social issues (ELSI) surrounding availability of genetic information (Murphy, 4) This represents the world’s biggest bio-ethics program, which has become a model for ELSI programs around the world. ELSI was established to develop not only answers but also raise questions about the Human Genome Project.

ELSI’s primary goal is to make clear and informative statements to the public about moral issues surrounding the Human Genome Project. They readily make this information available through publications and their world wide web site. I would now submit to you a list of just a few of the many controversial statements that ELSI is beginning to investigate.

1) Fairness in the use of genetic information by insurers; Employers, courts, schools, adoption agencies, and the military, among others. 2) Who should have access and how will it be used? Privacy and confidentiality of genetic information 3) Who owns and controls it? Psychological impact and stigmatization due to an individual’s genetic differences How does the information affect an individual, and society’s perceptions of that individual?

4) Genetic testing of an individual for a specific condition due to family history (prenatal, carrier, and presymptomatic testing) and population screening (newborn, premarital, and occupational) Should testing be performed when no treatment is available? Shouldparents have the right to have their minor children tested for adult-onset diseases? Are genetic tests reliable and interpretable by the medical community? 5) Reproductive issues including informed consent for procedures, use of genetic information in decision making, and reproductive rights. 6) Clinical issues including education of health service providers, patients, and the general public; and implementation of standards and quality control measures in testing procedures

7) Commercialization of products: issues include property rights (patents, copyrights, and trade secrets) and accessibility of data and materials. Conceptual and philosophical implications regarding human responsibility, free will versus genetic determinism, and concepts of disease and health. The Human Genome Project in itself is an extremely productive endeavor. While it’s focus is on creating an entire map of the human Genome, it is constantly publishing the steadily increasing volumes of information that are produced every year.

So we return to the question of whether or not the Human Genome Project is an imminent breach of good conscience and morals. There is no doubt that the project can be seen from both sides of the fence. While the data could be manipulated for the wrong purposes, it could also help to accomplish seemingly impossible medical miracles. And so, no doubt, we will fall as a nation into division. However, you are left to decide for yourself, what side of the fence you will be on.

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