-
NIH May 19, 2000 | R01
Beyond stigma: Interpreting Genetic Difference
Institution: University of Pennsylvania Center for Bioethics
FOA Number: RFA-HG-99-002
Abstract
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.
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
R01Project Number:
R01HG002189Start Date:
May 19, 2000End Date:
Apr 30, 2003PROJECT TERMS:
behavioral /social science research tag, Clinical Research, culture, Ethnic group, genetic disorder, Genetic Polymorphism, Genetic Screening, genetic susceptibility, human population genetics, human subject, Interview, Outcomes Research, psychological values, psychosocial separation, Questionnaires, social group process, social perception, social psychology