Tay-Sachs disease, screening and prevention : based on the First International Conference on Tay-Sachs Disease, Screening and Prevention, Palm Springs, California / editor, Michael M. Kaback ;ssociate editors, David L. Rimoin, John S. O'Brien.

  • International Conference on Tay-Sachs Disease: Screening and Prevention 1975 : Palm Springs, Calif.)
Date:
1977
Catalogue details

Licence: Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)

Credit: Tay-Sachs disease, screening and prevention : based on the First International Conference on Tay-Sachs Disease, Screening and Prevention, Palm Springs, California / editor, Michael M. Kaback ;ssociate editors, David L. Rimoin, John S. O'Brien. Source: Wellcome Collection.

    449/458 (page 429)
    Concluding Remarks Michael M. Kaback, md In the past 2 decades, major advances have been made in the science and technology of human genetics and, in turn, in understanding the role of heredi¬ tary factors in many human diseases. In conjunction with these vital scientific achievements, major changes have occurred in the social, legal, and ethical attitudes of Western society. Attitudes toward population control, quality of life, individual freedom, and abortion (to name but a few) are vastly different today from those of just a decade ago. It is in this context of scientific and cul¬ tural evolution, coupled with the traditional medical philosophy of minimizing the frequency and severity of disease, that effective control of certain inherited disorders of man becomes a realistic and current consideration. This volume provides a comprehensive analysis of the initial experience directed toward such a goal — the effective control of Tay-Sachs Disease, a uni¬ formly fatal neurodegenerative disorder of infancy. Because of the predilection for this condition of infants of Ashkenazi Jewish ancestry, the recent develop¬ ment of methods to identify the healthy adult carrier of this recessively in¬ herited disorder, and the availability of a procedure to prevent affected children from being born, a prototype basis for control of Tay-Sachs disease becomes feasible. Such an approach — community-based genetic education, voluntary carrier screening, and comprehensive genetic counseling — raises important and unprecedented issues for the physician-geneticist, the public health professional, the social scientist, individuals in the target community, and, in turn, for society at large. Genetic medicine and the simplest concepts of human genetics are, at this time, mainly abstract notions for the general public. The delicate and possibly threatening aura of this new health message, and the complex social and ethical issues involved, make voluntary heterozygote screening and prospective genetic disease prevention substantially different from other public health programs. Tay-Sachs Disease: Screening and Prevention, pages 429—430 © 1977 Alan R. Liss, Inc., New York, N.Y.