| Indian Journal of Medical Ethics | ||||||
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Intractable neurological disorders: Human genome
research and society AJAY NAIK
The disaster that Hesiod sees threatening a community that disregards justice... is not an eternity of damnation but the failure of nature to work - of crops to grow, of herds to bear, of women to produce normal children. In the developing nations of the third world, infectious diseases continue to be a burden on the health care system and are the bane of the poor. The developed nations, freed of most of these diseases, are now grappling with chronic diseases at extremes of age. As has been elegantly pointed out in the text of the proceedings of the seminar, the ability of modem medicine to prolong life in case of intractable neurological disorders in adults and to prenatally diagnose uncorrectable neurological diseases raises ethical, legal and social dilemmas which have never been required to be addressed in the past. Interventions at the end of life (ventilator care) or at the beginning of life or even pre- life (prenatal) represent major financial and administrative outlays. The need for community based care is of utmost importance in these groups of patients. Continual medical therapy after the patient is sent home from hospital by ‘home- visit medical programme’ is a revolutionary concept introduced in Japan. On the one hand it maintains continued medical supervision of the patient at home after discharge and on the other it pre-empts situations whereby patients are denied re- admission due to non- availability of hospital beds during periods of symptom exacerbation at home. Deadlines indicating termination of periods of in- hospital care facility may become a reality world-wide following escalating expense of medical care. It has been succinctly mentioned that patient care is no more the exclusive domain of the scientific- medical community but has to necessarily consider the right of self- determination of the patient and hold social, ethical and financial implications in perspective. Dignity of life, quality of life and sanctity of life are concepts which will seldom yield a solution in harmony when confronted with the request for euthanasia. Human genome studies raise the spectre of ‘eugenics’ as practised by the Nazis in European war prisons and the Japanese in Manchuria during the Second World War. In the following decades those blots on scientific study have been virtually cleansed. However, any new forays into genome research and genetic manipulations will have bio- ethical implications. Genetic research is a widely accepted and encouraged subject. Prenatal genetic diagnosis, on the one hand, reliably predicts the probable occurrence of disease in the future and, on the other, offers the option of early implementation of primary prevention strategies such as dietary restriction and pharmacologic manipulation in primary hypercholesterolemia. Is our response the same to untreatable manifestations like Huntington’s disease? The debate for legalised abortions at will for social or eugenic reasons will never be conclusively resolved. Is the human genome really sacred? Who will be the final arbitrator in allowing expression of one gene with so called superior qualities or obliterating the appearance of a gene with perceived inferiority or abnormality? Such questions have never needed to be answered in the bygone ages but will keep surfacing and nagging the human race in the future. The ‘white man’s burden’ has surpassed all conceivable limits. AJAY NAIK,Senior Resident, Department of Cardiology, Seth G. S. Medical College and KEM Hospital, Parel, Mumbai 400 012. Bioethics in high schools in Australia, Japan
and New Zealand. Darryl RJ Macer, Yukiko Asada, Miho Tsuzuki, Shiro Akiyama, Nobuko Y.
Macer. Christchurch, New Zealand: Eubios Ethics Institute, 1996. The survey conducted by Macer and co-workers sought to identify the recognition, perception and inculcation of bioethical values in high schools in Australia, Japan and New Zealand. Although an impersonal form of survey (questionnaire) had been used without direct personal contact; it is perhaps a telling comment on the state and awareness of this concept that less than 50% replies (collectively) could be obtained, despite reminders. This is a stark statement on the prevalent situation as the subjects to whom these questionnaires were directed were teachers, who are instrumental in shaping young minds and moulding their thought processes. In view of the fact that biology and social studies teachers were contacted it is but natural that animal experiments were the prime concern. The next most telling issues concerned in vitro fertilisation, surrogate motherhood, prenatal diagnosis, abortions, use of pesticides, genetic engineering and genetic manipulation in plants and animals. Use of animals in behavioural experiments as well as in dissections is encountered in almost two- thirds of the schools from which replies were received. The concerns voiced were similar, whether the primary objective of education was achieved with animal experiments, whether animals could be substituted by inanimate objects, whether observation in nature can replace the experiments or a facility to return the animal to nature could be implemented. A touching response was that it is sad to use any kind of creatures for experiments, but the strength of the opinion weakened for animals of lower order, from invertebrates downward to plankton. The concern for vertebrates is more than that for invertebrates, and lesser still for the lower order invertebrates. Whereas it was deemed acceptable to carry out genetic manipulation for increasing the yield of cash crops and increase the yield of milk in cattle, respondents frowned upon attempts to harvest the rich genetic pools of tribals of Afro- Asian nations. Perhaps optimal practice of bioethics will finally imply treading the middle path of attempting to do the best for the most rather than striving for the unattainable ideal. AJAY NAIK,Senior Resident, Department of Cardiology, Seth G. S. Medical College and KEM Hospital, Parel, Mumbai 400 012. A handbook of the Department of Anatomy, Seth G. S. Medical College, Parel, Mumbai. Anonymous, Department of Anatomy, Seth G. S. Medical College, Parel, Mumbai 400012. 1997 p 128. Paperback. Most of us are troubled by doubts and depression as we witness the general decline in standards of teaching and the shenanigans of those in charge of private medical colleges. This book offers solace and hope for here is a department attempting to build on past experience and extend its capabilities in a pioneering effort at imparting a clinical orientation to undergraduate anatomical education. The preface emphasises: “... An understanding of the basic sciences is essential to a complete understanding of disease. Pathology and clinical medicine, in their turn, improve one’s perception of the basic sciences. Each elucidating the other, they are inextricably linked in a glorious, ever- expanding circle...The handbook is designed to serve as a compass rather than a road map... It lets (the student) know what is most relevant to later study... ” Dr. S. M. Bhatnagar sets the pace by emphasising the relevance of anatomy to the medical student and to the doctor. Dr. M. L. Kothari talks of the joy of studying anatomy and travelling along the road that will serve both the student and his future patients without fail. Dr. Lopa Mehta, head of the department, succinctly discusses the ‘how’ of learning the subject, emphasising the use of both parietal lobes by an inquisitive mind that takes nothing for granted. The next chapter provides a brief history of the department with thumbnail sketches of the various helmsmen from Dr. R. P. Koppikar to M. L. Kothari. Subsequent chapters introduce the reader to the anatomy of the department of anatomy, its faculty, courses offered, the academic calendar, dissection schedule, description of diagrams to be drawn by each student in their journals and list of recommended texts. The student is then told of the system of evaluation followed by the department. The top three levels consist of 'May know’, ‘Desirable to know’ and ‘Must know’. Those ignorant of items grouped under ‘must know’ are deemed to have failed. They may have stumbled in understanding fundamental concepts (level four) or, indeed, have no concept at all (level five). The appendix lists the syllabus prescribed by the University of Mumbai. Why are we reviewing a book on anatomy in a journal on ethics? First of all, the volume sets a moral tone throughout. Consider this statement under ‘Evaluation’ : “The maximum attention is paid... to provide such a milieu wherein students feel mentally and physically free to have independent thinking, healthy interaction amongst peers as well as with teachers and find their own self-confidence, self- reliance and creative potentials. To sum up, the student cultivates a healthy attitude towards life in general, and towards other human beings and life forms...” Lofty ideals, indeed, to be heartily applauded. Secondly, the department has travelled far beyond its mandate. Let me provide an example. It has established a library of images - x-ray films, computerised tomographic and magnetic resonance images and sonographic studies - that help the candidate link what has been seen in the dissection hall to that seen in the living individual in the wards of the hospital. The department also provides financial aid to needy students through donations from individuals, trusts and private funds in addition to that offered by the Municipal Corporation. Finally, by guiding the student thus, with understanding and empathy, the volume sets a precedent that needs to be emulated by other departments in the same institutions and those in other institutions. SUNIL K. PANDYA,Department of Neurosurgery, KEM Hospital, Parel, Mumbai 4000 12 Euthanasia And Francis Bacon, who achieved more philosophical detachment in his Essays than in his shady financial dealings, wrote famously of the absurdity of the fear of death. "Men fear death as children fear to go into the dark." Theodore Dalrymple inSo little done
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