Informing one’s family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study

Abstract

Disclosure was stimulated if people felt morally obliged to do so or when they anticipated regret if something happened because it is preventable. Motivation to disclose seemed to increase if there were, especially fatal, cancer cases in the family. Presence of external cues (e.g. professionals) appeared important for disclosure as well. Disrupted and tense family relations were reasons not to disclose, as well as young age of the message recipients and negative experiences at their first attempt to disclose (a novel finding). Disclosure was merely restricted to the nuclear family. A personal approach in this respect was preferred. With respect to content of the disclosure, participants reported to solely announce the presence of the hereditary defect and the possibility of testing. It was mostly considered the recipients' responsibility and own choice to obtain further (technical/medical) information.

Living with Hereditary Non‐polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing

“…As was identified in our study, individual experiences of learning about heredity may also affect subsequent disclosure patterns (Forrest et al, 2003). Also, tense family relations and negative experiences from attempts to disclose information, may serve as barriers for information spread (Mesters et al, 2005). Hence, assimilation of genetic knowledge in the family is related to family …”

“…Communication with families with hereditary cancer is complex, but the individual's certainty in relation to his/her own risk estimated influences the likelihood of informing others (Forrest et al, 2003) and was also demonstrated in our study. A Dutch interview study in HNPCC has suggested that motivation to disclose information increases when cancer cases, especially if fatal, have occurred within the family (Mesters et al, 2005).…”

Communicating genetics research results to families: problems arising when the patient participant is deceased

“…D'Agincourt Canning [14] reported that mothers and fathers found telling their own children more burdensome because of the guilt they felt about passing on a mutation. Participants in the study by Mesters et al [9] were considered to have an attitude described as 'tomorrow never comes' with regard to their children; there is no age at which parents stop wishing to protect their children from potentially distressing information. It is of note that the mothers not at personal risk were less concerned about the possible negative implications of being at genetic risk for their children.…”

“…Most family members are, in principle, willing to disclose genetic information to relatives [5], motivated by a perceived sense of duty [6][7][8][9]; this duty however conflicts with a desire to protect relatives from potentially harmful and difficult information [10][11][12][13]. Individuals find that informing relatives imposes moral dilemmas as to whom, how, and when to tell, and that having to tell others presents a burden they had not anticipated at the time of testing [7,14,15].…”

“…Parents (BRCA1/2 carriers, non-carriers and their partners), wishing to protect their children from anxiety-provoking information, had deliberately managed the timing of informing their children about undergoing genetic testing, and had found the process difficult whatever strategy they had chosen. Several studies report instances of people not telling their children, either because they were unsure of how or when to do so [21], were unwilling [22], or thought their children too young [9]. Segal et al [23] found that a child's age was the most significant contributing factor in the decision to disclose, with the mean age at disclosure being 24.3 years.…”