The Human Genome Project And Its Ethical

, Legal And Social Implications Essay, Research Paper

“…research on the human genome and the resulting applications open up vast prospects for progress in improving the health of individuals and of humankind as a whole…such research should fully respect human dignity, freedom and human rights, as well as the prohibition of all forms of discrimination based on genetic characteristics,” (UNESCO Declaration on the Human Genome and Human Rights, July 1997) The Human Genome Project (HGP) is a co-ordinated, international research programme, which aims to identify and locate all human genes by determining the entire sequence of the human genome by the year 2005. Although there are indisputable benefits of this research, it is fraught with difficult ethical, legal and social issues. The possible implications are therefore an essential part of our understanding of the project. The Human Genome Project´s main objective is to determine the complete ‘reference´ human genome that will be the basis for further studies. This is being achieved using both physical and genetic mapping. According to the Genome Data Base (GDB), over 7000 of an estimated 80 000 human genes have already been mapped to particular chromosomes. The goal of physical mapping is to produce a genome map consisting of approximately 30 000 markers separated by about 100 kilobases. Each marker will be a sequence-tagged site, a stretch of DNA with a unique and well-defined sequence. Sequencing, that is, the listing of the order of the approximately three billion base pairs that make up the human genome, is the final planned step of the project. Also key is the pursuit of advances in technology, including robotics, automation, and new methods of identifying and mapping genes, to allow large-scale sequencing. The storing and analysing of the vast amounts of data generated by the project are also a consideration, and requires the development of new database tools and software. The benefits of sequencing the human genome are expected to be enormous. We will have information that will vastly increase our knowledge of the structure and function of DNA in chromosomes. It is thought that this information will revolutionise future biological research, particularly in the fields of medicine, gene testing, gene cloning and biotechnology. Mapping the human genome will lead us to understand the underlying causes of genetic diseases such as cystic fibrosis, Huntington´s disease, sickle cell anaemia and many forms of cancer. This, together with new clinical technologies will alter medical practices, with the onus shifting from treatment to prevention. Development of new classes of cheaper, purer drugs are expected, along with the possible replacement of defective genes through gene therapy. Scientists will also be capable of preventing genetic disorders by determining an individual’s predisposition to a particular disease through gene testing. This information could then be used to help individuals to avoid environmental conditions that may act as triggers. Advances in research into DNA mutation are also expected, since researchers will be able to directly study the effects of mutagens on DNA. We will be better able to understand the genetics not only of ourselves, but also of animals. Gene cloning will allow us to produce healthier and more productive animals, potentially able to produce drugs and other useful products for human consumption. In the future, cloning technology may be used in humans to produce whole organs from single cells or to raise animals with organs suitable for human transplantation. Advances are also anticipated in the industries related to biotechnology, for example, agriculture, energy production and environmental cleanup. These raise controversial issues concerning animal rights and the safety of genetically engineered food for human consumption. Genetic engineering also provides the prospect of us being able to modify bacteria to produce therapeutic products. Although the potential benefits of sequencing the human genome are immense, and indeed there are likely to be additional benefits that have not yet been considered, there is also scope for misuse of information and a threat to personal privacy. In 1997, UNESCO published a Declaration on the Human Genome and Human Rights. Although the recommendations were general, it outlined some important principles. “Everyone has a right to respect for their dignity and for their human rights regardless of their genetic characteristics…that dignity makes it imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity” [Article 2 a) and b)] The Declaration supports seeking informed consent of individuals, highlighting the importance of educating both the public and medical professionals on issues relating to the Human Genome Project. It entirely supports the right of an individual to decide whether or not to be informed of information relating to their genetic profile. It also states that any benefits from advances in genetic science should be made available to everyone. These principles represent what most people consider to be right, however, they paint a simplistic view of a complex problem. The US Department of Energy and the National Institutes of Health have so far allocated between 3% and 5% of their total budget for the Human Genome Project to the investigation of Ethical, Legal and Social Issues (ELSI)