Predictive testing for BRCA1 and 2 mutations: a male contribution

Daly, Peter A.; Nolan, Carmel; Green, Andrew J.; Ormiston, W.; Cody, Nuala; McDevitt, Trudi; O'hIci, Bronagh; Byrne, Declan; McDermott, E.; Carney, Desmond N.; O’Higgins, N. J.; Barton, D. E.

doi:10.1093/annonc/mdg164

Cited by 33 publications

(57 citation statements)

References 25 publications

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“…Another qualitative study reports the experiences of men in breast cancer families [12]. Four quantitative studies described the genetic counseling and testing process and outcome of men at risk [13,14], psychological functioning and attitudes during genetic testing [15] and the needs of 59 male carriers [16] (Table 1).…”

Section: Selection Of Studiesmentioning

confidence: 99%

“…Several studies denote that males often describe their decision of genetic testing as an obligation to their children, and many described genetic testing as a family duty [7,9,11,15,16]. Even men without daughters and single men wanted a genetic test to show familial solidarity [14]. Some of the studies report a lack of information and exclusion of adult children from decision-making prior to the men's genetic tests [21].…”

Section: Males Decision-making Regarding Genetic Testingmentioning

confidence: 99%

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Men in the women’s world of hereditary breast and ovarian cancer—a systematic review

et al. 2009

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Little is known about men seeking genetic counseling for hereditary breast and ovarian cancer (HBOC). We review the sparse literature on men attending such genetic consultations. Two main themes are identified: the women's influence on the genetic counseling process, and the psychological impact on men. The women in the HBOC families have an influence on the men's decision to request genetic testing, and they take the leading role in communicating genetic information. With respect to psychological impact, the men suffer from grief and fear of developing cancer, and they seem to use avoidance as a coping strategy. Carrier males experience feelings of guilt because they might have passed on a mutation to their children. Non-carriers experience test-related stress if their siblings tested positive. Mutation status may have an impact on reproductive issues. These findings are discussed in light of gender issues and literature concerning men's health behavior. Further studies are needed to provide optimal care for men seeking genetic counseling for hereditary breast and ovarian cancer.

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Section: Selection Of Studiesmentioning

confidence: 99%

Section: Males Decision-making Regarding Genetic Testingmentioning

confidence: 99%

Men in the women’s world of hereditary breast and ovarian cancer—a systematic review

et al. 2009

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“…15 Studies also report that men from families with hereditary breast/ovarian cancer fear that they will develop breast cancer, are aware that they are at increased risk of prostate and bowel cancer, and have intrusive thoughts about this increased risk. 14,16,17 It has also been reported that men admit to preferring avoidance and denial to cope with their cancer risk, 16,18 avoid discussing their emotions, 16,17 have unresolved grief about past and future losses, and experience guilt about passing on a potentially lethal gene mutation to their future offspring. 17,19,20 Very little is known about men who do not attend FCCs because of difficulties in ascertaining these individuals and/or a lack of interest in participating in research studies.…”

Section: ; Kconfab Investigatorsmentioning

confidence: 99%

A comparison of male attendees and nonattendees at a familial cancer clinic

Lobb

Gaff

Meiser

et al. 2009

Genetics in Medicine

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; kConFab InvestigatorsPurpose: This retrospective descriptive Australian study aimed to determine predictors of nonattendance at a familial cancer clinic by men from high-risk breast/ovarian cancer families. Methods: Two hundred twenty-six men from families with a known BRCA1 or BRCA2 mutation were recruited through an epidemiological database of high-risk breast cancer families and completed a self-administered questionnaire. Results: Multivariate analyses using binary logistic regression showed that nonattendance at a familial cancer clinic by men from high-risk breast/ovarian cancer families was associated with younger age (51 vs. 55 years) (odds ratio ϭ 1.03, P ϭ 0.04) and lower cancer burden (one relative diagnosed versus two relatives diagnosed) (odds ratio ϭ 2.6, P ϭ 0.04). Conclusion: Compared with men who attended a familial cancer clinic, nonattendees were younger and had fewer relatives diagnosed with breast/ovarian cancer. Unlike previous findings, cancer-specific worry, in particular avoidance was not associated with nonattendance. The number, age, and sex of biological children were not associated with attendance or nonattendance. Hence, some of the assumptions about what makes information on BRCA1 or BRCA2 status salient to men and may therefore influence their attendance at a cancer genetic clinic are not borne out in this study. Genet Med 2009:11(11):806 -811.Key Words: BRCA1, BRCA2, men, familial cancer clinics E xtensive data from surveys conducted in Canada, 1 the Netherlands, 2,3 the United Kingdom, 4,5 and France 6,7 detail the characteristics of women who attend familial cancer clinics (FCCs) and who decide to have genetic testing. Self-reported reasons cited by many women in different countries for attending FCCs include desire to know personal and family risk, awareness of family history, need for reassurance, desire for genetic testing, and to find out about breast cancer screening or prevention. 5,6,8,9 A strong motivating factor seems to be concern about personal risk triggered by the diagnosis of (or death from) breast cancer in a first-degree relative. 4,10 A recent review indicates that women who attended and choose to have genetic testing were more likely to be affected with cancer, have higher levels of cancer anxiety and perceived risk, and larger numbers of relatives diagnosed with cancer. 11 Less data are available on men's motivations for attending genetic counseling. Fewer men than women are referred and accept genetic counseling.9,12 Men who do take up genetic counseling have a tendency to miss appointments, drop out of testing protocols, 13 and experience difficulties in establishing appropriate post-test care.14 Hallowell et al. 15 reported that men's decisions to have genetic testing were motivated by a desire to obtain information for their kin and a sense of obligation to determine the carrier status of their children. Their decision to undergo testing was also influenced by family members such as partners and adult children. 15 Studies also report that men from famil...

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“…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.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2008

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Objectives: This study explores communication within families of clinically significant genetics research results, after the death of the patient participant. BRCA2 mutations were found in several men after their death from prostate cancer. Spouses were given the results in a genetic counselling session and asked to inform relatives.Methods: Cross-sectional, qualitative exploratory study. Interviews with 13 relatives, including informers and recipients of the information, were analysed using interpretative phenomenological analysis.Results: Dissemination was hampered when communication channels between relatives were limited, because of family rifts or socially distant or problematic relationships. When informing other branches of the family, relatives approached individuals in the generation of the deceased man, regardless of their risk status, who were then responsible for informing younger relatives. Most people informed by a relative did not seek genetic counselling. The informing relative may not have sufficient authority for the information either to be taken seriously or to challenge individual constructions about the aetiology of cancer. This impeded information transmission to further at-risk relatives. Most participants knew of relatives who had not been told about their cancer risk.Conclusions: The implications of this limited efficiency of information transfer among relatives are discussed in the context of a potential role for genetics services in contacting atrisk relatives directly.

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Predictive testing for BRCA1 and 2 mutations: a male contribution

Abstract: Complex themes associated with genetic testing are confirmed and the spectrum extended. Men appear to understand the importance of participating in this process. Methods of avoiding adverse reactions merit further study along with other aspects of the process.

Cited by 33 publications

References 25 publications

Men in the women’s world of hereditary breast and ovarian cancer—a systematic review

Men in the women’s world of hereditary breast and ovarian cancer—a systematic review

A comparison of male attendees and nonattendees at a familial cancer clinic

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

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