Harlequin Ichthyosis among the Navajo: Counseling issues |
| |
Authors: | Patricia N. Olney Richard S. Olney |
| |
Affiliation: | (1) Department of Obstetrics and Gynecology, The University of New Mexico, Albuquerque, New Mexico;(2) Department of Pediatrics, Gallup Indian Medical Center, Gallup, New Mexico;(3) Centers for Disease Control, Mailstop F-45, 30333 Atlanta, Georgia |
| |
Abstract: | Harlequin Ichthyosis is a rare, fatal congenital disorder of keratinization characterized by thickened, scale-like plaques of skin with a diamond configuration. Autosomal recessive inheritance has been established, and prenatal diagnosis for this disorder remains controversial. Five infants with this disorder were born among approximately 25,000 Navajo women who delivered in Gallup, New Mexico from 1970 to 1989. The incidence of 1 in 5000 among the Navajo in Gallup is high compared to previous reports in other populations. Two families with affected infants were seen in a genetics outreach clinic. Two important counseling issues were raised: (1) reluctance to discuss the possibility of recurrence for fear of affecting the outcome, and (2) feelings of guilt caused by cultural beliefs which attributed the birth defect to paternal behavior during pregnancy. Such issues are encountered in many traditional cultures, and they can be addressed by tailoring the timing and content of counseling.The opinions expressed are those of the authors, and are not to be construed as reflecting the views of the Public Health Service. |
| |
Keywords: | Harlequin Ichthyosis genetic counseling Navajo culture prenatal diagnosis guilt |
本文献已被 SpringerLink 等数据库收录! |
|