DEVELOPMENTAL TASKS OF CHILDHOOD AND ADOLESCENCE - IMPLICATIONS FOR GENETIC TESTING

Many reports have recently recommended a careful weighing of the poten tial benefits and harms of genetic testing (carrier or predisposition) of children and adolescents [Andrews et al., Washington DC: National Academy Press, 1994; Wertz et al., JAMA, 272:875-881, 1994; Clinical G enetics Society (UK), J Med Genet, 31:785-797, 1994; ASHJ/ACMG, Am J H um Genet, 57:1233-1241, 1995]. Despite this, youngsters are currently being tested for late-onset disorders as well as for carrier status [R eilly and Wertz, Am J Hum Genet, 57:A57, 1995]. Many children to be te sted will be those in at-risk families, who may already have experienc ed the chronic illness or death of a close relative. Thus, reactions t o testing will be influenced by prior family experiences. Emotional re actions to testing will be determined by both the child's cognitive an d psychosocial development. Testing of adolescents may alter the achie vement of developmental tasks, including seeking freedom from parental figures, establishment of personal identity, handling of sexual energ ies, and remodeling of former idealizations of self and others. There are many potential dilemmas in deciding whether to test a child or ado lescent for genetic status. If parents choose not to test, the risk is for later difficulty integrating such information into the self conce pt. If parents test and do not tell results, the risk is for creating a climate of family secrecy. If parents test and tell results, the ris k is robbing the child of the autonomy of his or her own later decisio n. Perhaps the question of whether to test is not the real question. M ore than genetic testing, genetic counseling is of crucial importance in thoughtful decisions concerning whether to test an individual child or adolescent. A more important question may be how to provide unaffe cted children in at-risk families with appropriate counseling. Provisi on of psychosocial support to at-risk families will enable the child t o encounter genetic testing, if necessary, supported with the best pos sible resources. (C) 1997 Wiley-Liss, Inc.