The 130th Annual Meeting of APHA

Abstract #38577

Deborah Schild Wilkinson, PhD, MPH, MSW¹, Elizabeth A. Meier¹, Deneil Kolk¹, and Stacy Parmele, MSW². (1) School of Social Work, University of Michigan, 1080 S. University, Ann Arbor, MI 48109, 734-615-2582, drsw@umich.edu, (2) Regional Center of the East Bay, 2151 Salvio Street, Concord, CA 94520

In 1993, the Institute of Medicine convened the Committee on Assessing Genetic Risks, charged with assessing the implications of genetic testing. Because genetic tests involve the use of new technologies and frequently do not reveal definitive results, but instead provide probabilistic findings, the committee recommended that all tests be accompanied by genetic counseling, to be offered both prior to and after tests are administered. Though the classical definition of genetic counseling clearly indicates the need to address psychological issues for clients, there have been few empirical studies of psychosocial adjustment to a genetic diagnosis after counseling. Thus, the knowledge base related to these needs is largely derived from practice experience. As a first step in addressing the lack of empirical knowledge of psychosocial needs, the authors have undertaken a qualitative pilot study to gain a broader understanding of the perceptions of these needs in families and genetic services providers. The authors will present the findings of a pilot study of interviews conducted with genetic counselors (Sampling frame N=51) and families with genetic diagnoses (N=10). The findings, which will inform a larger national study, will seek to: 1) Advance understanding of the psychosocial needs of families following genetics diagnoses; 2) Identify unmet needs and barriers to care, particularly among vulnerable and underserved populations; 3) Provide information to inform professional social work practice to better serve families faced with a genetics diagnosis; and 4) provide information to inform policymakers to help ensure the equitable availability of comprehensive genetics services to vulnerable populations.

Learning Objectives:

• Understand the psychosocial needs of families with genetic diagnoses.
• Understand the availablity and use of services to meet those needs.
• Understand the factors associated with both the specific psychosocial needs of famlies and their use of care to address the needs.

Keywords: Genetics, Social Work

Presenting author's disclosure statement:
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.