Identity and the ethics of gene therapy

Some conditions detrimental to human well-being, such as sickle-cell anaemia, cystic fibrosis, muscular dystrophy, Lesch-Nyhan disease and various immunodeficiencies, are genetically determined. One potential means of preventing the development of such conditions is the manipulation of genetic material in the conceptus of an organism which would otherwise develop such conditions. Genetic manipulations could take the form either of excising and substituting genetic material, excising but not substituting genetic material, adding but not excising genetic material or reorganizing existing genetic material. To succeed, manipulation would have to change genetic structure so as to change its informational content. It might be thought, however, that all or some such manipulations would involve causing particular individuals to cease to exist and involve bringing into existence new, distinct individuals. Gene therapy could not, therefore, be a procedure which improved the circumstances of the particular individual to whom it is applied. It might be suggested that once the metaphysics of identity and the facts of gene therapy are understood, certain interesting conclusions concerning the ethics of gene therapy emerge. Some such conclusions have been discussed in this journal by Noam J. Zohar and Jeffrey P. Kahn. More, however, needs to be said about them since neither Zohar nor Kahn draws the correct conclusions. While both have pertinent things to say, neither has given a completely clear account of the metaphysics of gene therapy and so neither has completely traced out the implication of the metaphysics for the ethics of gene therapy. This paper attempts to remedy these defects.     

The origin of ethics

The evidence of ethics attitudes are quite difficult to be identified in the archaeological record. One of the first attitudes we can assume from the archeological record are those related with the recognition of death and how this recognition change the attitudes related with the deposition of humans corpses when death. The presence of graves or burials are firstly related with the Middle Palaeolithic in Eurasia. Its presence and distribution present many questions not so easy to solve. With the Upper Palaeolithic, the presence of items like decoration elements and those related broadly with “offerings”, give us the opportunity to understand the role of the individuals in the society.     

The ethics of life expectancy

Some ethical dilemmas in health care, such as over the use of age as a criterion of patient selection, appeal to the notion of life expectancy. However, some features of this concept have not been discussed. Here I look in turn at two aspects: one positive — our expectation of further life — and the other negative — the loss of potential life brought about by death. The most common method of determining this loss, by counting only the period of time between death and some particular age, implies that those who die at ages not far from that one are regarded as losing very little potential life, while those who die at greater ages are regarded as losing none at all. This approach has methodological advantages but ethical disadvantages, in that it fails to correspond to our strong belief that anyone who dies is losing some period of life that he or she would otherwise have had. The normative role of life expectancy expressed in the 'fair innings' attitude arises from a particular historical situation: not the increase of life expectancy in modern societies, but a related narrowing in the distribution of projected life spans. Since life expectancy is really a representation of existing patterns of mortality, which in turn are determined by many influences, including the present allocation of health resources, it should not be taken as a prediction, and still less as a statement of entitlement.     

The ethics of learning from patients

Is it ethical for medicine to use patients as learning tools for medical students if these patients have not been given a chance to provide truly informed consent? Dr. Caroline Shooner raises this question in the following article, which claimed second prize in CMAJ''s 1996 Logie Medical Ethics Essay Contest. She considers the case of a patient whose trust was shaken when a medical student performed a chest-tube insertion. Shooner concludes that psychologic harm could have been avoided had the patient''s right to informed consent been respected. She also argues that few patients will turn down a chance to help students learn if the request is made properly and openly.