The Human Genome Project: Implications for Families (Practice Forum) (Case Study‪)‬

The Human Genome Project was the international research effort whose goal was the mapping and understanding of all human genes (National Human Genome Research Institute [NHGRI], 2005). Approximately 30,000 to 40,000 human genes have been identified and located by the Human Genome Project (NHGRI). The Human Genome Project has created a dramatic increase in information regarding the structure, organization, and function of human genes. As a result, the number of genetic tests available continues to grow. This increase in the availability of testing raises important social and ethical issues for all families, but especially for families with children who have genetic-related disabilities. Andrews and colleagues (1994) reported on the concerns from individuals with disabilities about the implications of increased genetic testing. Little is known about the perceptions of, and attitudes toward, the implications of the Human Genome Project among families who have children with genetic-related disabilities. This gap in knowledge limits the development of effective educational strategies to assist families with decision making regarding the family and health care implications of the Human Genome Project. Genetic disease is a family issue; it affects not only the individuals with genetic conditions, but also the parents, siblings, extended family members, and community. For almost 40 years, social workers have been involved in providing genetic services. Sylvia Schild began to define the role of social workers in genetic services in 1966 (Taylor-Brown & Johnson, 1998). In 1984, Schild and Black insightfully projected that the most pressing task facing the social work profession would be preparing social workers for effective practice in genetics (Taylor-Brown & Johnson). The relevance of the Human Genome Project to social work practice and policy has continued to grow, and its significance is rapidly increasing as families address the implications on their family's health and health care. The purpose of this study was to explore how families identify information and to assess their perceptions of, and attitudes toward, the implications of the Human Genome Project on their family's health care.