Views of Siblings of People with Intellectual Disabilities on Heredity and on the Information about Heredity Given to Them:

An Investigation in a Self-help group

Abstract

    I organized a study session and exchange meeting led by a doctor who practices genetic counseling in a hospital, and I carried out a survey before the session and after the meeting on the views of siblings of people with intellectual disabilities on heredity and on the information about heredity that was given them. As a result, it became clear that it is difficult for siblings of people with intellectual disabilities to obtain genetic information in everyday life, and they feel fearful and guilty about talking about heredity because they are afraid of being seen as discriminatory towards people with disabilities. At the exchange meeting, the significance of siblings talking about heredity was apparent. If people in their situation could obtain information from a specialist, it was suggested that they could acquire information in a sense of security and share their experiences and thoughts. It was hoped that similar study sessions would continue be held on a regular basis.