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Stigmatization of carrier status: Social implications of heterozygote genetic screening programs

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  • Kenen, R.H.
  • Schmidt, R.M.

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.

Suggested Citation

  • Kenen, R.H. & Schmidt, R.M., 1978. "Stigmatization of carrier status: Social implications of heterozygote genetic screening programs," American Journal of Public Health, American Public Health Association, vol. 68(11), pages 1116-1120.
    • Handle: RePEc:aph:ajpbhl:1978:68:11:1116-1120_5
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    Cited by:

    1. Clarke, Angus, 2016. "Anticipated stigma and blameless guilt: Mothers' evaluation of life with the sex-linked disorder, hypohidrotic ectodermal dysplasia (XHED)," Social Science & Medicine, Elsevier, vol. 158(C), pages 141-148.
    2. Mendes, Álvaro & Sousa, Liliana & Sequeiros, Jorge & Clarke, Angus, 2017. "Discredited legacy: Stigma and familial amyloid polyneuropathy in Northwestern Portugal," Social Science & Medicine, Elsevier, vol. 182(C), pages 73-80.

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