Ethical, social, and legal dimensions of screening for human genetic disease / editor, Daniel Bergsma ; Genetics Research Group of the Institute of Society, Ethics and the Life Sciences.

Date:
1974
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Licence: Attribution-NonCommercial 4.0 International (CC BY-NC 4.0)

Credit: Ethical, social, and legal dimensions of screening for human genetic disease / editor, Daniel Bergsma ; Genetics Research Group of the Institute of Society, Ethics and the Life Sciences. Source: Wellcome Collection.

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    Introduction In recent years, genetic screening has moved from relatively simple medical programs which are designed to alert individuals potentially affected by genetic disease to the need for treatment, to broader and more complex programs designed to detect and counsel individuals at risk for developing or transmitting genetic and genetic-related disease or disability. Among other factors, the advent of prenatal diagnosis for both simple and complex genetic disorders, combined with the possibility of selective abortion, and of carrier detection of prospective parents at risk for transmitting genetic disease have greatly increased the impetus for expanding screening programs. Prenatal diagnosis, which had been used almost exclusively where one or both parents were at risk as carriers of a serious genetic disease, could now be extended to mothers at risk for age-related disorders, particularly the Down syndrome, or to families with a history of neural tube defects. Some genetic screening programs already encompass markers indicative of future physiologic difficulties, such as alpha 1-antitrypsin (associated with emphysema) or adenosine deaminase deficiency (associated with combined immune deficiency) where there may be but vague prior indications of increased risk in the family. The movement to cast the genetic screening net further and further afield has been hailed by some biomedical scientists as a welcome expansion of the health care services that society can bring to individuals and their families. Others have questioned the wisdom of the objectives of such programs and have perceived potential medical, psychologic and sociologie hazards in premature enlargement of the scope of extant genetic screening programs. The papers in this series are the result of two years of deliberation, discussion and review among members of the Genetics Group of the Institute of Society, Ethics and the Life Sciences, Hastings-on-Hudson, N. Y., of the multifaceted problems posed by the advent of the technologic potential for mass genetic screening.* While no single group of papers can *A preliminary publication of this Group's provisional findings appeared in the May 25, 1972, issue of the New England Journal of Medicine (N. Eng. J. Med., 256:1129-1132, 1972.) vii