Skip to main content
Journal of Medical Genetics logoLink to Journal of Medical Genetics
. 1996 Apr;33(4):313–318. doi: 10.1136/jmg.33.4.313

Parents' responses to predictive genetic testing in their children: report of a single case study.

S Michie 1, V McDonald 1, M Bobrow 1, C McKeown 1, T Marteau 1
PMCID: PMC1050581  PMID: 8730287

Abstract

There is a widely held view among health professionals that predictive genetic testing of children for late onset diseases is not desirable clinical practice. Yet, little is known about the views of parents, or their responses, to predictive genetic testing in their children. Since such testing is being carried out in some genetic centres, the opportunity was taken to conduct a single case study of the parents of 2 and 4 year old sisters who were tested for the gene for familial adenomatous polyposis. Interviews before testing, after, and 15 months later showed a stable attitude, that parental responsibility included making decisions about such testing, and that the role of health professionals should be one of information giving rather than decision making. These parents had no regrets about having their children tested and reported no changes in their behaviour towards either the child who tested positively or the child who tested negatively. Using standardised scales, mood was found to be within the normal range both before and after testing in the mother and father. This case study is a first step towards systematic empirical studies determining the consequences of acquiescing to parents' requests for genetic testing in their children.

Full text

PDF
313

Selected References

These references are in PubMed. This may not be the complete list of references from this article.

  1. Horowitz M., Wilner N., Alvarez W. Impact of Event Scale: a measure of subjective stress. Psychosom Med. 1979 May;41(3):209–218. doi: 10.1097/00006842-197905000-00004. [DOI] [PubMed] [Google Scholar]
  2. Lynch H. T., Watson P., Conway T. A., Lynch J. F., Slominski-Caster S. M., Narod S. A., Feunteun J., Lenoir G. DNA screening for breast/ovarian cancer susceptibility based on linked markers. A family study. Arch Intern Med. 1993 Sep 13;153(17):1979–1987. [PubMed] [Google Scholar]
  3. Marteau T. M., Bekker H. The development of a six-item short-form of the state scale of the Spielberger State-Trait Anxiety Inventory (STAI). Br J Clin Psychol. 1992 Sep;31(Pt 3):301–306. doi: 10.1111/j.2044-8260.1992.tb00997.x. [DOI] [PubMed] [Google Scholar]
  4. Marteau T. M. The genetic testing of children. J Med Genet. 1994 Oct;31(10):743–743. doi: 10.1136/jmg.31.10.743. [DOI] [PMC free article] [PubMed] [Google Scholar]
  5. Morris M. J., Tyler A., Lazarou L., Meredith L., Harper P. S. Problems in genetic prediction for Huntington's disease. Lancet. 1989 Sep 9;2(8663):601–603. doi: 10.1016/s0140-6736(89)90721-6. [DOI] [PubMed] [Google Scholar]
  6. Wiggins S., Whyte P., Huggins M., Adam S., Theilmann J., Bloch M., Sheps S. B., Schechter M. T., Hayden M. R. The psychological consequences of predictive testing for Huntington's disease. Canadian Collaborative Study of Predictive Testing. N Engl J Med. 1992 Nov 12;327(20):1401–1405. doi: 10.1056/NEJM199211123272001. [DOI] [PubMed] [Google Scholar]
  7. Zigmond A. S., Snaith R. P. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983 Jun;67(6):361–370. doi: 10.1111/j.1600-0447.1983.tb09716.x. [DOI] [PubMed] [Google Scholar]

Articles from Journal of Medical Genetics are provided here courtesy of BMJ Publishing Group

RESOURCES