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Gen-ethic Anxiety and Some Reflections on the Genome Project

Abdullah D. Dogan

Jan 1, 2006

The Genome Project was started at a research institute known as HUGO, which is short for the Human Genome Project, in Montreux, Switzerland on October 1, 1990. This important project, with consequences that are not yet understood, was beyond human imagination at the time it was established, and is expected to provide answers to many questions in our minds.

With the full extent of its use not being understood at the time of its establishment, the project emerged mainly with the pharmaceutical mission to predict, detect, treat, and cure diseases that were caused by genetic anomalies by identifying the genetic information in the human organism.

The desire for such a project was something akin to, or even beyond, the desire to climb Mount Everest, for it aimed to find out something that was unknown at the time. In such fields of biology as cell biology, immunology, and neurology the specialists need genetic information from human organism. The genetic information that an individual organism inherits from its parents can open a door to answer the questions of how an individual develops, how long an individual will live, or how the various species on Earth have lived over many generations.

New developments followed one upon another with the emergence of the Human Genome Project. When the famous Scottish sheep, Dolly, was cloned in 1997, it still seemed to be theoretically impossible to clone a human being. American scientists cloned an ape named Tetra which shared 98 per cent of the same genetic information as human beings. Soon after this, the scientists began to suggest that that all that remained to be cloned was humans.

Dr. Richard Nicholson, the editor of the Bulletin of Medical Ethics, noted that there is no danger in cloning humans, as long as the techniques of doing so are kept under control. If a dictator, however, were to get hold of this information, they would be able to produce an army of genotypically identical soldiers.

The most exciting scientific study of recent years of the Genome Project is that it is trying to develop a complete gene map of an individual organism. According to scientists, a human body has between thirty thousand and fifty thousand genes. All genetic features identifying an individual are found in the gene sequences of the DNA molecules. Eye color, character traits, IQ, and all the illnesses a person may possibly develop are all hidden in the genes. The genome carries all the hereditary features that determine all of life's diversity, determining whether an organism is human or another species, or ape; all living things have their own genomes. The human genome, which is the full complement of genetic material, and which resembles large tablets recording the history of ancient civilizations, is distributed among 23 sets of chromosomes. It is comprised of approximately three billion letters and is the biological record of our destiny.

Ethical, Legal, and Social Issues

In H. G. Wells’ classic novel The Island of Dr. Moreau (1896), Dr. Moreau conducts hybrid experiments on animals that result in twisted masses of flesh, half-man, half-animal. When the European Patent Office allowed the Australian company Amrad to obtain new embryos by combining human and animal cells, this led to a revival of genetic fears, more than a hundred years after the story of Dr Moreau was published. Not surprisingly, this event alarmed several civilian organizations, including Greenpeace. In a press statement made in Hamburg, Greenpeace drew attention to the fact that we might face “dangerous creatures” in the future that would be created from such techniques. Probably one of the most disturbing facts was that the patent did not disclose how these creatures were to be used. Greenpeace voiced opposition to this for the following reason: “A patent grants its owner the exclusive control over his/her invention. Therefore, patents on life fundamentally change our perception and understanding of living nature and our relationship towards it. Living organisms, which have been ‘created’ by industry and which can be patented cannot have a value of their own, since they are only considered an invention of human beings. Thus they can be exploited without any ethical concerns.”

According to the patent, the embryonic stem cells derived from humans, mice, birds, sheep, pigs, cattle, goats, or fish could be used. The patent covers a “method of producing a non-human chimeric animal” by mixing human and animal embryonic cells: human stem cells are integrated into animal embryos. As a result, the created chimeras are non-human, but they may contain human organs, body parts, nerve cells, and even human genetic codes.

Experts state that the system of producing chimeras is completely different from that of cloning and they drew attention to the risks involved. For example, a virus like the one that caused mad-cow disease could easily pass from one species to another.

The Media Joins the Issue

Thanks to the great interest people have shown in the future of genetic studies, we frequently come across news reports that deal with the topic. However, we would like to note that titles like “the homosexuality gene has been found” or “genetic solution to talkativeness discovered” infuriate genetic scientists. Dr Arnold Munnich says that media aims to raise interest by misinforming the public with subjects like “obesity gene” or “laziness gene”; they merely oversimplify the issue. Dr Munnich emphasizes that a gene means nothing by itself.

The Danger of Abuse

The researches who have worked toward improving gene technology have performed some good for humanity; this is without a doubt. However, there is the risk of abuse. The discoveries in this field may be worth a great deal financially; when we add the rivalry between companies and countries, it seems highly likely that legal bans and ethical rules will be ignored. Some people even object to all kinds of genetic research, not only their abuse. They say that the abuse of seemingly useful genetic technology practices in the future is possible, as has happened in other fields of technology; nuclear researches and laser technology also used to be innocent studies at the very beginning. But we cannot object to the use of electricity just because it is also used for executing people with electric chairs.

Governments and international organizations are quite sensitive to ensure that gene technology will only be used for the good of humanity. There are several international organizations interested in the ethical dimension of the issue. There are certain rules and regulations that establish the fundamental principles that will prevent the abuse of genetic studies, and protect the biodiversity and ecological balance. It is forbidden to carry out research on human cloning and altering human embryos. In the past, dictators like Adolf Hitler attempted to abuse gene technology in this respect. The ruthless Dr Joseph Mengele tried to clone his Fuhrer from the epitel cells he took from him.

Will Confidentiality be Respected?

Another concern brought about by new diagnosis methods and tests is that the principle of patient confidentiality, which has existed for centuries like a secret agreement between doctors and their patients, has begun to be debated, even violated. We usually talk about such “confidentiality” when the information is likely to be harmful for the patient if publicized. From this perspective, the results obtained by genetic tests can be evaluated as such. It is one of the duties of doctors to maintain patient confidentiality. On the other hand, if the relevant data is also likely to harm society, the hospital staff, and those around the patient, then the doctor can face a dilemma.

Some of the possible problems that may be faced due to the mapping of human genome will be that employers could be provided with forehand knowledge about the potential genetic diseases of applicants; they may know whether the person to be employed will be a future financial burden to the company if they carry such genetic risks as cancer or Parkinson’s. In this way new standards of employment will be developed. Even though systematical public surveys do not indicate any significant dangers at hand, it would be nearly impossible to stop rumors. Several people may be denied insurance if they have the genes for a fatal disease. Another may be dismissed from their job for the same reason. In the USA, it is illegal in 39 states to issue insurance policies according to genetic test results, and it is also illegal in 15 states to expel employees according to these. However, employers and insurance agents take advantage of the gaps in relevant laws and they secretly make use of genetic tests. According to research carried out in 1999, 30% of medium-sized or small businesses use such tests to promote and dismiss their employees.

Psychologically, it does not seem likely that people would consent to their status being determined by genetic tests. Would you really like to face your genetic disadvantages? A survey made with cooperation of Time magazine and CNN revealed that half of the participants did not want to know.

The Fate of an Unborn Baby

Deciphering the book of life unfortunately brings along ethical problems. The discovery of our genetic codes can also lead to other humans controlling the future of the human race. The critical question is “Can scientists produce human beings with the desired physical and mental qualities?” If so, genomic science may enable biologists to prepare a list of spare parts, parents may “order” a baby, and as altering our children or ourselves gets easier, we may be less tolerant against those who have not been altered. Lori Andrews of Kent University wonders if we were to be informed of mental defects, obesity, shortness or other undesired characteristics beforehand, whether the parents of those babies would still allow them to be born into a society that scorns such qualities. Even now, it is not uncommon to see some doctors and nurses criticize the parents of babies who are born with pre-detectable defects. If we assume that all parents have “ordered” babies, God knows what kind of a world we will have.

What Should the Aim of Such Practices Be?

Genetic studies should aim to prevent or treat illnesses, not to “enhance” genes. The opportunities offered by genetics should not be a mass elimination medium used by employers or a mechanism of spotting potential criminals in the hands of oppressive regimes. The Almighty One Who has been running the order of our universe so perfectly has granted us some keys to its mysteries. Why should we not do our best and use them for the good of humanity?

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