Vol , Issue Date of Publication: October 01, 1997

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Intractable neurological disorders: Human genome research and society

Ajay Naik


Proceedings of the Third International Bioethics Seminar in Fukui, 19- 21 November, 1993. Editors: Norio Fujiki, MD, and Darryl R. J. Macer, Ph.D. Christchurch, New Zealand: Eubios Ethics Institute, 1995.

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.

About the Authors
Ajay Naik
Senior Resident, Department of Cardiology Seth G.S.
Medical College & KEM Hospital, Parel, Mumbai 400 012.
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