Beyond stigma: Interpreting Genetic Difference

The proposed project will determine the factors with which people distinguish genetic from non-genetic disease, and the factors that they bring to bear in interpreting genetic diseases or conditions. The project will identify the ways in which these factors might vary between the following three contrastive pairs:

- people who are members of racial or ethnic groups that historically have been subjected to stigmatization, versus those who are not;

- scientists who conduct this research, and the lay public who it may concern; and

- people who have a known genetic condition, and those who do not.

We will explore these questions with two studies:

- Study 1 is a face to face guided interview that includes open-ended questions and card sorts;

- Study 2 is a questionnaire, that includes a Social Stigma Scale and an Attribution of Genetic Difference Scale.

The project goals are to determine the variety of factors people bring to bear on interpreting genetic conditions, the circumstances that encourage stigmatization, and to test the hypothesis that stigmatization occurs more often among people who are members of populations that are already stigmatized.