Ambiguous Loss and Disenfranchised Grief: The Impact of DNA Predictive Testing on the Family as a System

Authors


  • This study was supported by a grant from the Pilot Project Awards program of the Office of Patient Oriented Research at the University of Vermont, College of Medicine, Fletcher Allen Health Care, Burlington, Vermont.

concerning this article should be addressed to Susan Sobel, Department of Psychiatry, UHC, Arnold 6, 1 South Prospect Street; Burlington, Vermont 05446. E-mail: susan.sobel@vtmednet.org

Abstract

DNA predictive testing to diagnose the presence of hereditary disease in asymptomatic individuals has become increasingly available. Information provided by these tests has implications for all relatives. In an exploratory study we examined the impact, from the family's perspective, of predictive DNA testing for Huntington disease on the family as a system. Central to their stories was a sense of loss and grief that was perhaps unique to the testing situation. The description of these losses is presented in the context of ambiguous loss as defined by Boss, disenfranchised grief as presented by Doka, and anticipatory grief as addressed by Rolland. These theories suggest clinical interventions that can be used by healthcare professionals to help families adjust to the psychosocial consequences of testing.

Death too is in the egg.

—Anne Sexton, All My Pretty Ones (1962, p.13)

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