Development and Validation of Tools to Assess Genetic Discrimination

An increasing number of public messages, including direct-to-consumer advertising for genetic testing and therapies, reference race as shorthand to capture scientific associations relating disease susceptibility and drug metabolism. Media theory and research suggest a wide variety of stereotyping effects arise from the use of racial exemplars to illustrate specific issues. Thus, public messages referencing race in association with advertising for genetic testing and therapies, RBGM may heighten racial stereotyping and increase patient fears about genetic discrimination, with such concern limiting utilization of genetic testing and therapies. Lay audiences who self-identity as black American as compared to white American may differ in concern about possible stereotyping and/or genetic discrimination associated with messages about genes and health based on the historical context and current health disparities that exist between blacks and whites in the United States. Too often, health interventions designed to address health disparity rely on stereotypes of racialized social groups, and in doing so, fail to place culture at the center of both theory and practice. This research examined both the nature of lay views associated with genetic discrimination and the effects of self-identifying as either black or white American on these perceptions.


We stand at the threshold of a world in which knowledge about the genetic make-up of human beings may afford great opportunities to intervene in disease processes. The most notable benefit of human genetic research and the Human Genome Project (HGP) for the public may be the ability to identify the presence of a gene associated with disease, so that one may thwart the development of a deadly, debilitating and/or disfiguring illness. With these opportunities, however, come significant responsibilities which must also be systematicall addressed. Current and prospective uses of genetic testing for diagnosis and prevention have raised concerns not only about life and health insurance discrimination but also about stigmatization and heightened racism. Concerns about genetic discriminatory attitudes and effects are well-founded, as suggested by Nelkin and Lindee, who indicate that, “If an employer, or educator or insurer can make the case that the ‘predicted’ future status of their client matters, then discrimination—denial of opportunity for medical care, work or education— can occur with impunity. Indeed, predictive genetic typing may create an underclass of individuals whose genes seem to have marked them for the nowhere track” (p. 167).
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Fear of discrimination often enters into individual decision-making about whether to seek genetic tests. A variety of legislative efforts have been undertaken to try to mitigate issues related to direct abuse associated with genetic information and discrimination. These policy efforts may also reinforce individual fears or uncertainties associated with reproductive freedoms that arise from lay perceptions, foreshadowing concern that individuals with particular genes may be precluded from marrying or bearing children. The lay public may have well-formed attitudes about genetic discrimination in regard to genetics, genetic testing and genetic information. Individuals may, in fact, generalize understanding about a genetic component of physical diversity among races to a genetic component of behavior. Little systematic inquiry has been done, however, to evolve understanding of lay audience frameworks for genetics, race and discrimination despite the reality that in an era of gene identification, discussions about genetic health issues can pose challenges associated with a variety of psychological, social and societal issues. generic levitra online

Category: Diseases / Tags: genetic discrimination, health communication, instrument development, racism, racism and genetics

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