Selection of family members for communication of cancer risk and barriers to this communication before and after genetic cancer risk assessment

Abstract

Purpose: The impact of genetic cancer risk assessment on communication of cancer risk information within families is not fully known. We compared women's selection of family members for cancer risk communication and perceived barriers to this communication before genetic cancer risk assessment and 6 months afterward.Methods: Mailed surveys were used to collect prospective data from consenting women undergoing genetic cancer risk assessment because of a personal and/or family history of breast or ovarian cancers. Analysis included descriptive statistics, chi-square and McNemar tests, and paired t tests. Results: A total of 122 women met the study criteria. Although risk communications increased with first-degree relatives (84%-90% for females; 53%-62% for males) and decreased with non-first-degree relatives (21%-9%) before and after genetic cancer risk assessment, the degree of change was nonsignificant. The most commonly cited communication barrier was loss of contact (30%). Demographics, personal or family cancer history, and BRCA status did not significantly influence findings. Conclusions: There was a high degree of cancer risk communications with female first-degree relatives, but less so with male first-degree relatives, both before and after genetic cancer risk assessment. In the United States, breast cancer is the most common cancer in women and is second only to lung cancer in cancerrelated deaths for women. 1 Although ovarian cancer strikes far fewer women, the mortality rate is disproportionately higher, often because of insufficient early diagnostic tools. Risks for these cancers vary greatly. For instance, breast cancer risk for women with a single first-degree relative (FDR) with postmenopausal breast cancer may be 15% versus 12% risk for the general population by age 80 years. Ovarian cancer risk for a woman with a single FDR with the disease is approximately 5%, versus the 1.6% risk for the general population. 2-5 However, breast cancer risk for women who carry a BRCA gene mutation ranges from approximately 30% to 50% by age 50 years to as high as 87% by age 80 years in some families, with a 40% to 60% risk for a second primary breast cancer. 6 -8 The associated risk for ovarian cancer is approximately 15% to 45%, with onset generally after age 40 years rather than after age 60 years in the general population. 6,7,9 Siblings and offspring of BRCA mutation carriers are at a 50% risk for inheriting the mutation. Because men rarely develop breast cancer and are not at risk for ovarian cancer, BRCA-associated risk may be masked by male transmission and unrecognized by both clinicians and patients.Since the advent of commercial BRCA testing approximately a decade ago, genetic cancer risk assessment (GCRA) has been increasingly integrated into women's health care to provide individuals and their families with age-and risk-level appropriate cancer screening and risk-reduction strategies. GCRA is typically conducted by a physician and nurse or genetic counselor team with expertise in genetics and/or onco...

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

“…Typically In general, first degree relatives were more likely to be told of test results than more distant relatives (Blandy et al, 2003;McGivern et al, 2004;Claes et al, 2003;MacDonald et al, 2007). Distant relatives were more likely to be informed of a conclusive test result than an inconclusive result (Claes et al, 2003;Hamilton et al, 2005;Hughes et al, 2002).…”

“…Many studies found that sisters were more likely to be told of test results than were brothers (Hamilton et al, 2005;McGivern et al, 2004;Claes et al, 2003;MacDonald et al, 2007). This could be because of the greater cancer risks in sisters compared to brothers in these families, especially if the teller were found to have a mutation.…”

“…As well, sisters may be preferentially told if they have a closer relationship to the teller than brothers do, especially when 17 discussing a 'female' topic like breast or ovarian cancer. 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).…”

“…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). …”

Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study

“…15,17 Reasons for not communicating results to relatives include lack of a close relationship, infrequent communication, or thinking that the genetic information might upset a particular relative. [17][18][19] Despite accumulating knowledge on the psychological and communication aspects of genetic testing, little is known about the effects of the testing process on family relationships per se. Although positive family relationship effects have been reported more frequently than negative ones, these results come mainly from cross-sectional studies with small samples and with a time since result disclosure, which varied considerably between subjects.…”