Abstract
Possible latent psychological and social consequences ensuing from genetic screening programs need to be investigated during the planning phase of national genetic screening programs. The relatively few studies which have been performed to determine psychological, social, and economic consequences resulting from a genetic screening program are reviewed. Stigmatization of carrier-status, having major psychosocial implications in heterozygote genetic screening programs, is discussed and related to Erving Goffman's work in the area of stigmatization. Questions are raised regarding the relationship between such variables as religiosity and sex of the individual and acceptance of the status of newly identified carrier of a mutant gene. Severity of the deleterious gene and visibility of the carrier status are two important factors to consider in an estimation of potential stigma. Specific implications are discussed for four genetic diseases: Tay-Sachs, Sickle-Cell Anemia, Huntington's disease and Hemophilia.
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Selected References
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- Carter C. O., Roberts J. A., Evans K. A., Buck A. R. Genetic clinic. A follow-up. Lancet. 1971 Feb 6;1(7693):281–285. doi: 10.1016/s0140-6736(71)91016-6. [DOI] [PubMed] [Google Scholar]
- Childs B., Gordis L., Kaback M. M., Kazazian H. H., Jr Tay-Sachs screening: social and psychological impact. Am J Hum Genet. 1976 Nov;28(6):550–558. [PMC free article] [PubMed] [Google Scholar]
- Clow C. L., Scriver C. R. Knowledge about and attitudes toward genetic screening among high-school students: the Tay-Sachs experience. Pediatrics. 1977 Jan;59(1):86–90. [PubMed] [Google Scholar]
- GOFFMAN E. On cooling the mark out; some aspects of adaptation to failure. Psychiatry. 1952 Nov;15(4):451–463. doi: 10.1080/00332747.1952.11022896. [DOI] [PubMed] [Google Scholar]
- Hampton M. L., Anderson J., Lavizzo B. S., Bergmen A. B. Sickle cell "nondisease". A potentially serious public health problem. Am J Dis Child. 1974 Jul;128(1):58–61. [PubMed] [Google Scholar]
- Headings V. E. Alternative models of counseling for genetic disorders. Soc Biol. 1975 Winter;22(4):297–303. doi: 10.1080/19485565.1975.9988186. [DOI] [PubMed] [Google Scholar]
- Leonard C. O., Chase G. A., Childs B. Genetic counseling: a consumers' view. N Engl J Med. 1972 Aug 31;287(9):433–439. doi: 10.1056/NEJM197208312870904. [DOI] [PubMed] [Google Scholar]
- McCormack M. K., Scarr-Salapatek S., Polesky H., Thompson W., Katz S. H., Barker W. B. A comparison of the physical and intellectual development of black children with and without sickle-cell trait. Pediatrics. 1975 Dec;56(6):1021–1025. [PubMed] [Google Scholar]
- Rutkow I. M., Lipton J. M. Some negative aspects of state health departments' policies related to screening for sickle cell anemia. Am J Public Health. 1974 Mar;64(3):217–221. doi: 10.2105/ajph.64.3.217. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Schmidt R. M., Curran W. J. A national genetic-disease program: some issues of implementation. N Engl J Med. 1976 Oct 7;295(15):819–820. doi: 10.1056/NEJM197610072951507. [DOI] [PubMed] [Google Scholar]
- Westoff C. F., Rindfuss R. R. Sex preselection in the United States: some implications. Science. 1974 May 10;184(4137):633–636. [PubMed] [Google Scholar]
- Whitten C. F., Fischhoff J. Psychosocial effects of sickle cell disease. Arch Intern Med. 1974 Apr;133(4):681–689. [PubMed] [Google Scholar]
- Young W. I., Peters J., Houser H. B., Jackson E. B., Jr Awareness of sickle cell abnormalities. A medical and lay community problem. Ohio State Med J. 1974 Jan;70(1):27–30. [PubMed] [Google Scholar]
- ZUK G. H. The religous factor and the role of gulit in parental acceptance of the retarded child. Am J Ment Defic. 1959 Jul;64(1):139–147. [PubMed] [Google Scholar]