Developmental tasks of childhood and adolescence: implications for genetic testing

Many reports have recently recommended a careful weighing of the potential 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 Genetics Society (UK), J Med Genet, 31:785-797, 1994; ASHJ/ACMG, Am J Hum Genet, 57:1233-1241, 1995]. Despite this, youngsters are currently being tested for late-onset disorders as well as for carrier status [Reilly and Wertz, Am J Hum Genet, 57:A57, 1995]. Many children to be tested will be those in at-risk families, who may already have experienced the chronic illness or death of a close relative. Thus, reactions to testing will be influenced by prior family experiences. Emotional reactions to testing will be determined by both the child's cognitive and psychosocial development. Testing of adolescents may alter the achievement of developmental tasks, including seeking freedom from parental figures, establishment of personal identity, handling of sexual energies, and remodeling of former idealizations of self and others. There are many potential dilemmas in deciding whether to test a child or adolescent for genetic status. If parents choose not to test, the risk is for later difficulty integrating such information into the self concept. 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 risk is robbing the child of the autonomy of his or her own later decision. Perhaps the question of whether to test is not the real question. More 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 unaffected children in at-risk families with appropriate counseling. Provision of psychosocial support to at-risk families will enable the child to encounter genetic testing, if necessary, supported with the best possible resources.