THE GENOME PROJECT
A 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 within the next ten years. Although there are indisputable benefits to this research, it is fraught with difficult ethical, legal and social issues. In July 1997, the United Nations Educational, Scientific and Cultural Organization (UNESCO) hoped to establish some boundaries within which the project would operate by stating that all research should “fully respect human dignity, freedom and human rights, as well as the prohibition of all forms of discrimination based on genetic characteristics”.
B Whether in favour of the project or not, there is no doubt it has already had astounding effects. Ten percent completed already, the comparatively simple collection of data is already leading to major 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, requiring the development of sophisticated new software. Yet what the project offers now is almost inconsequential in the face of its potential applications. The information could 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. From drugs to new limbs, many currently accepted medical practices could be a thing of the past.
C Although the potential benefits of sequencing the human genome are immense, there is also scope for misuse of information and a threat to personal privacy. New guidelines have to be fixed, and UNESCO has supported the 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.
D These principles represent what most people consider to be appropriate, yet 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). Studies are currently concentrated in two main areas: privacy and confidentiality of genetic information, and the development of education in genome science and ELSI. Other issues raised by the project include fairness in the use of genetic information, genetic testing, reproductive issues, clinical issues, commercialisation issues and finally, philosophical implications.
E Genetic testing also raises reproductive issues concerning the use of genetic information in decision-making. As a society, we should consider the acceptability of testing unborn infants. Is abortion on the basis of genetic disorder acceptable? If so, how severe must the ‘disorder’ be in order to justify terminating the pregnancy? In some countries, sex discrimination in family planning is already a problem, and it is possible that this practice may expand in the future to include unborn infants with ‘undesirable’ genes. If children with genes that may cause disease in adulthood are tested, at what age should they be told the results? In a survey of its members, the UK Genetic Interest Group (GIG) said that prenatal testing for late-onset conditions should not be carried out unless the mother agrees to terminate the pregnancy, since, if born, the infant has not given consent to be tested.
F The results of the Human Genome Project will affect us all, either directly or indirectly. One of the main threats is that it has the potential to provide us with consequences that have not yet been considered. Without time to think about what is ethically sound, this may lead to considerable difficulties. It is generally held that advances that will prevent human suffering are worthwhile, whereas those that will not are questionable. It can be argued that the advancement of our knowledge concerning the human genome is progressing faster than our ability to regulate its impact. It is clear that widespread education is needed, so that people can formulate and voice opinions on what is ethically and socially acceptable, and so that policy and legislation may be brought into place to govern practices that concern the human genome.
G Finally, conceptual and philosophical issues raise questions regarding human responsibility, as opposed to concepts of genetic ‘fates’ and beliefs concerning disease and death. Genetic engineering is particularly controversial. Does anyone have the right to ‘play God’? As researchers locate genes associated with cognitive abilities and behaviour, will we be tempted to ‘improve’ our children? Some people argue that genetic enhancement is simply another form of selective breeding, which is present in nature. However, human genetic engineering cannot be developed without some degree of experimentation on humans. The possibility of germ-line therapy, where changes are made to the genomes of future generations is especially debatable. This may in some respects be beneficial. For example, it will improve the success rate of gene therapy by allowing scientists to remove a defective gene by altering just one cell. However, this kind of treatment could have unpredictable effects that would change the lives of all subsequent generations. Since the individuals are unborn, their consent cannot be obtained. Theoretically, it would be possible to take control of our own evolution and create ‘superhumans’. According to some scientists, genetic enhancement is an irresistible reality that is only twenty years away.