Description: RESPOND-HD looks at issues of discrimination.

The University of Iowa received a grant award by the Department of Health and Human Services National Institutes of Health for the RESPOND-HD study.

The information gathered in this study will allow us to examine the experiences of persons who have undergone genetic testing for the Huntington’s disease (HD) mutation or who have a family history of HD.  This study will seek answers to questions such as “How is knowledge used after genetic testing?” “What experiences occur following genetic testing?” and “Why might outcomes differ in persons undergoing genetic testing?”

Three groups at-risk for HD will be recruited and enrolled in this study:  Individuals who have undergone predictive testing and tested positive, individuals who have undergone predictive testing and tested negative, and individuals who are currently at-risk for HD and have not undergone predictive testing. 

Participants will be asked to complete a survey booklet that contain a variety of questions including: Experiences and decision-making about genetic testing, concerns about unfair treatment by others, specifically involving employment and insurance companies, and existing laws and policies surrounding genetic discrimination, as well as other related topics.