 | The 131st Annual Meeting (November 15-19, 2003) of APHA |
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| The 131st Annual Meeting (November 15-19, 2003) of APHA |
Virginia L. Miller, DrPH, Center for Healthcare Effectiveness Research, Wayne State University School of Medicine, RM 121 Shiffman Medical Library, 4325 Brush Street, Detroit, MI 48201, 313.993.1332, vmiller@med.wayne.edu and Angela Martin, MSW, Developmental Disabilities Institute, Wayne State University, 268 Leonard Simons Building, 4809 Woodward Avenue, Detroit, MI 48202.
Little is known about what families who have children with genetic-related disabilities know about the Human Genome Project. Less is known about their perceptions and attitudes toward the Human Genome Project. The purpose of this study was to learn what families who have children with disabilities know and how they perceive the implications of the Human Genome Project on their family’s health and health care. A survey instrument was developed utilizing case scenarios focusing on the themes of prenatal genetic testing, new treatments/cures, insurance coverage following a change in employment, and genetic testing for young adult siblings of children with genetic-related disabilities. Follow-up questions to the case scenarios included a question regarding where the parents learned their information. Parents were recruited to participate in the study interview from a variety of settings, including parent support group meetings, the Early On Collaborative Project, and the Division of Genetics clinic at Children’s Hospital of Michigan. Twenty-seven parents of children with genetic-related disabilities participated in the study. The ages of the children ranged from 1 through 18 years; a wide range of genetic conditions were represented. Parents identified that they learned their information from their personal experiences, support groups, and broad-based media sources. This paper will include the findings related to each of the case scenario questions as well as implications for public health education interventions to assist families in decision-making regarding the family and health care implications of the Human Genome Project.
Learning Objectives:
Keywords: Children With Special Needs, Disability
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: N/A
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.