Parents' responses to disclosure of genetic test results of their children

Abstract

The psychological reactions of 22 parental couples and 3 single parents were investigated after disclosure of genetic test results of their children. The children were tested for the early-onset, monogenetic cancer disorder multiple endocrine neoplasia type 2. Participants came from 13 different families and were aged between 28 and 47 years. Parents who were informed that their child was a gene carrier reacted with resignation, showed moderate to high levels of test-related and general anxiety, but few psychological complaints. Daily activities were disturbed in 43% of the parents with carrier-children. There was little disruption of the parents' future perspective, apart from some socioeconomic disadvantages and increased parental concern for the carrier-children. Most parents with carrier-children showed restraint with respect to short-term prophylactic treatment. Parents with favorable test results showed significantly less anxiety and no disturbance in their daily activities. They did not, however, seem to be reassured by the DNA test result. These parents questioned the reliability of the DNA test, wanted confirmation of the test results, and were eager to continue screening of their noncarrier children. Parents, especially those with a lower level of education and/or a pessimistic view of the future, were distressed by unfavorable test results. Additional counseling is advised to prevent parents of carrier-children worrying unnecessarily, or parents with children in whom the disease gene was not found being not reassured. Am. J. Med. Genet. 94:316-323, 2000.

Impact on parents of HLA-DQ2/DQ8 genotyping in healthy children from coeliac families

“…This pessimistic interpretation by the parents of a favourable result of genetic testing has been reported before after testing for cancer genes in children. 21 One explanation could be the failure of adjustment to the sudden removal of the disease scenario, as it has been found in genetic testing for Huntington disease. 22 The above mentioned misinterpretation of negative HLA findings opens the question whether parents correctly understand the results of HLA-typing for CD and of susceptibility genetic testing in general.…”

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

“…49 In the context of genetic testing of children, the doctor owes a duty of confidentiality to the child, not to the parents. 50 The doctor must seek permission from the child to communicate information to others, provided, obviously, that the child has the legal capacity to consent to this. If the child can consent to testing, it is assumed that s/he is legally capable of either consenting or refusing disclosure to others, including the parents.…”

“…Currently, there is no consensus in the literature that testing children will benefit them psychologically [49], which is mainly due to the lack of clear empirical evidence. 72 A few studies indicate that the receipt of positive test results has a more adverse emotional effect on children and their parents than the receipt of negative test results [50,51]. 73 Therefore, testing a child for the benefit of a relative is limited in Israeli law, as reflected in the wording of section 27, precisely because there is no guarantee that psychological harm to the child will not occur.…”

Parental Authority, Future Autonomy, and Assessing Risks of Predictive Genetic Testing in Minors

“…Even if the test result is negative, there might still remain a residual risk of developing the disease. One study (Grosfeld et al 2000) reported that even parents who received "good news" often were not reassured by the DNA test result and still planned to continue to have their children who did not test positive montiored. Other studies have also found that while the value of a genetic test varies across individuals, for parents the results may increase anxiety and distress (Dinc and Terzioglu 2006).…”