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

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.

Parental Attitudes and Beliefs regarding the Genetic Testing of Children

“…There is, however, only a small literature examining parental attitudes about the appropriateness of genetic testing of infants and children [6,7,8,9,10,11,12,13,] and most of these studies were done outside of the U.S. [9,10,11,12,13] None examined whether parental attitudes differed based on race or ethnicity. In this project, we queried black and white parents about their attitudes and beliefs regarding the procurement of genetic information about their children.…”

High Distress in Parents Whose Children Undergo Predictive Testing for Long QT Syndrome

“…Parents in our study seem to have been more distressed during the process of predictive counseling than parents of children diagnosed for cancer genes [7,8,9]. Furthermore, we measured the same elevated distress levels after DNA disclosure as before DNA disclosure.…”

“…Most families in a pilot study by Tonstad [6] did not experience psychosocial problems after the diagnosis of familial hypercholesterolemia. In the other three studies with sample sizes of one couple of parents, 23 families, and 47 parents, respectively, the psychological well-being also remained within normal limits in parents whose children were tested for hereditary cancerdiseases with an early onset: familial adenomatous polyposis [7, 8] and multiple endocrine neoplasia type 2 [9]. Only subclinical increases in psychological measures of distress were found after disclosure of test results.…”

Genetic testing of children for familial cancers: a comparative legal perspective on consent, communication of information and confidentiality

“…This may be at the 37 44 Re C (Detention: Medical Treatment) [1997] 2 FLR 180. 45 See, Herring [37], supra n. 54, at p. 169. 46 Re C (Welfare of Child: Immunisation) [2003] EWCA Civ 1148.…”

“…45 Since the child is cooperative, able to attend the clinic on his/her own, and is legally competent to consent, testing can be conducted and the medical team will be legally covered, especially if they can show that testing benefits the child.…”