Monday, 18 August 2003
This presentation is part of : Bio-Medical Breakthroughs, the Implications for Diagnosis, Treatment, and Ethics for the 21st Century

KP002-001 Adjusting to Potentially Life Altering Genetic Information: Research Findings on the Role of Existential Group Psychotherapy

Mary Jane Esplen, Division of Behavioral Sciences and Health Research, Division of Behavioral Sciences and Health Research, Toronto General Research Institute, Toronto, ON, Canada

The Human Genome Project is a fast-developing area of health research and is leading to new ways of dealing with health and disease. New gene-based diagnostic tests, such as genetic testing, are currently being performed leading to revolutionary treatment and prevention options. The information and technology gained as a result of this project are expected to have a profound impact on individuals and society. Knowing the entire sequence of the human genome will, accordingly, raise questions about how this information will be used and interpreted by individuals, families, and society.

The benefits of risk evaluation are readily apparent. Health care providers can anticipate and be vigilant for symptoms of disease and, with the patient, can maintain active surveillance for early signs when elevated risk is known. Additionally, knowing that one is at risk for a disease may help people avoid or "prepare" for it. There may be steps one can take to prevent disease onset and there may be important personal issues that need to be resolved before illness develops. However, information as a result of a genetic test is potentially life-altering and has existential implications for the individual and family members. For the older adult, a primary motivation for considering testing is to learn about the risk of disease for offspring. Once individuals are notified of the presence of a gene mutation they are strongly encouraged to inform family members of their eligibility for genetic testing. This role can involve a number of challenges as a result of family dynamics, communication styles, the knowledge of "passing down" a genetic mutation and concern of worrying others about potential disease risk. Additional psychological burden may stem from medical decision-making around prophylactic interventions (ie surgery) and life decisions among those "at risk" for disease, such as the decision to have children. While a number of health benefits can result, the complex issues associated with genetic knowledge have the potential to lead to fear, worry, and distress.

The fundamental premise of existential psychotherapy is an orientation to the present, which can be stimulated by the threat of knowledge about one's future. Confrontation with one's mortality, while anxiety provoking, may potentially enrich one's own existence. The model of supportive-expressive group psychotherapy (Spiegel and colleagues, 1989, 1991) which incorporates principles of existential therapy provides an optimal format that brings together individuals at the forefront of this medical technology and the opportunity to examine their various reactions, life assumptions, meanings and experiences with genetic testing. This approach promotes the use of this information in a way that is life-enhancing, can reduce distress, and enhance coping. The presentation will provide an overview of the psychosocial and behavioral issues associated with genetic technology, as well as case examples and research findings from ongoing studies of supportive-expressive group psychotherapy in the field of cancer genetics.

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