Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients

Abstract

The psychological aspects of genetic testing for hereditary breast and ovarian cancer (HBOC) in cancer patients (diagnostic genetic testing) have so far received less attention than predictive genetic testing in unaffected persons. Our study is aimed at gaining insight into the psychological aspects of diagnostic genetic testing and at formulating practical recommendations for counseling. Cancer patients often play a key role in the communication of information to relatives because they were the first individuals to be tested in the family. The present article focuses on the communication to close and distant relatives about the hereditary cancer, the genetic test and its result. Participants previously diagnosed with breast and/or ovarian cancer, with a family history of these cancers and who requested DNA-testing, were eligible for the study. Of the 83 eligible patients who could be contacted, 63 participated (response rate = 76%). Twenty-six participants were members of a family where a BRCA1 or BRCA2 mutation was detected. The DNA-analysis in the family of 37 participants had not revealed any mutation. Data were collected by semi-structured interviews and psychological tests and questionnaires. The dissemination of information was largely focused on first-degree relatives. Communication to distant relatives about the genetic test and its result was problematic. Other than the genetic test result and age as "objective" predictors of informing distant relatives, little and/or superficial contact seemed to be the major subjective barrier to informing distant relatives. Furthermore, the knowledge about HBOC of these messengers reveals several shortcomings. Communication within the family should receive special attention during counseling.

The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

“…Other less commonly mentioned barriers or deterrents for disclosures to family members included geographic distance Green et al, 1997), the assumption other relatives would disclose the information to family members (Claes et al, 2003), dilemmas 16 between family members about how to best disclose to others (Hallowell et al, 2005a), the teller's lack of confidence in their own communication skills (Daly et al, 2001;, the fear that the information would be misunderstood by family members (Hughes et al, 2002;Hamilton et al, 2005) and thinking the information would not be useful to the family member (Forrest et al, 2003;MacDonald et al, 2007;Daly et al, 2001;Claes et al, 2003).…”

“…This gender difference in disclosures might extend to offspring, as daughters were found more likely to be told than sons in some studies (Blandy et al, 2003;Patenaude et al, 2006;MacDonald et al, 2007). A similar trend may be seen in more extended relatives (Claes et al, 2003).Regarding disclosures to offspring, Bradbury et al (2007) noted that the majority of adult and late adolescent children were told about their parent's mutation or the hereditary risk of cancer. Parents were less likely to disclose this information to younger children (Patenaude et al, 2006;Bradbury et al, 2007).…”

“…Some tellers were able to overcome their concerns and fulfill the duty they felt to inform their family members, often by clinging to the hope of scientific progress (Hallowell et al, 2003). Others felt that the potential for disturbing or upsetting their relatives outweighed the benefits of disclosing, at least for the time being (Hallowell, 1999;Bradbury et al, 2007;Hallowell et al, 2005a;Hughes et al, 2002).Other less commonly mentioned barriers or deterrents for disclosures to family members included geographic distance Green et al, 1997), the assumption other relatives would disclose the information to family members (Claes et al, 2003), dilemmas 16 between family members about how to best disclose to others (Hallowell et al, 2005a), the teller's lack of confidence in their own communication skills (Daly et al, 2001;, the fear that the information would be misunderstood by family members (Hughes et al, 2002;Hamilton et al, 2005) and thinking the information would not be useful to the family member (Forrest et al, 2003;MacDonald et al, 2007;Daly et al, 2001;Claes et al, 2003). …”

Predictive genetic testing experience for myocilin primary open-angle glaucoma using the Australian and New Zealand Registry of Advanced Glaucoma

“…Almost all respondents disclosed their results to their family, regardless of their genetic result, and most of them even talked about the testing process before knowing their results, consistent with studies on hereditary cancers. 25,26 All respondents with adult children, except one, disclosed their genetic result. The individual who did not was a noncarrier, and we postulate that the person did not think it useful to discuss the result with her children because there was no increased risk of developing glaucoma.…”

Outcomes of a randomised controlled trial of a complex genetic counselling intervention to improve family communication

“…1 Effective family communication occurs less frequently than is optimal with some estimates suggesting that only 15-20% at-risk relatives become aware of relevant and important information. [2][3][4] Family members usually express a desire to pass on this information themselves 5,6 with support from health professionals, if necessary, to explain more complicated concepts. 7 It seems likely that most relatives would intend to pass on genetic risk information and that, where this does not occur (non-disclosure), this is usually a 'passive' failure to disclose rather than the proband actively avoiding communication.…”