The missing link in linkage analysis: the well sibling revisited.
Linkage analysis is a powerful tool for gene localization. Although the impact of genetic testing of minors has been debated, the impact of genetic sampling of minors has been ignored. Inclusion of the well sibling in linkage analysis represents a unique situation in that the sibling has not sought testing and therefore encounters genetic possibilities without the offer of genetic counseling. Thirty-five siblings of individuals with ataxia-telangiectasia (A-T), including 26 adults and 9 adolescents, drawn from the University of California, Los Angeles, The A-T Clinical Center at the Johns Hopkins University School of Medicine, and the A-T Children's Project, were interviewed; 27 reported having given blood sometime before the age of 18. They reported that sampling during their childhood or adolescence stimulated fears of the procedure itself, apprehension concerning follow-up reporting of carrier results, and confusion about the possibility of having A-T. The investigator's direct encounter with minor siblings of persons affected with genetic disorders represented a highly charged event in the lives of these individuals. Although the visit may increase anxiety, this intervention may in fact be a healthy change, offering permission to speak of difficult concerns, as well as serving as a powerful vehicle of conveying important information of a medical and genetic nature.
Fanos
J H
JH
Medical Genetics Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD 20892, USA. jfanos@cooper.cpmc.org
D000293:Adolescent; D000328:Adult; D001260:Ataxia Telangiectasia / Q000235:genetics / Q000523:psychology*; D005239:Fear; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D008040:Genetic Linkage / Q000235:genetics; D005820:Genetic Testing / Q000523:psychology; D006801:Humans; D007407:Interviews as Topic; D008297:Male