Guilt, blame and responsibility: Men's understanding of their role in the transmission of BRCA1/2 mutations within their family

Public Health Sciences, The Medical School, University of Edinburgh, and Western Australia Centre for Cancer and Palliative Care Research, Perth, UK.
Sociology of Health & Illness (Impact Factor: 1.88). 12/2006; 28(7):969-88. DOI: 10.1111/j.1467-9566.2006.00515.x
Source: PubMed


Men and women who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. The sons and daughters of mutation carriers have a 50 per cent chance of inheriting a mutation, which will increase their risk of developing cancer. Little is known about at-risk men's feelings about the part they play in the transmission of BRCA1/2 mutations within their families. This study investigated high risk men's responses to BRCA1/2 predictive genetic testing. Seventeen in-depth interviews were undertaken with carrier (n= 5) and non-carrier men (n= 12). All men described genetic testing as a familial duty. It is observed that carriers and non-carriers mobilised differing explanations about their role in the aetiology of risk. It is noted that men engage in a form of narrative reconstruction in which they draw upon discourses of guilt and blame or fate and predestiny in an effort to present themselves as morally responsible or blameless. It is argued that narrative reconstruction enables these men to reconcile their genetic identity, self and family.

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Available from: Anneke Lucassen, Oct 12, 2014
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    • "We also argue that it was unclear how successful, ultimately, such 'gene talk' was in holding (self-)blame and guilt at bay. As research on other illnesses has made clear, there are a variety of ways in which people can feel and express guilt – or not – in relation to genetic models of transmission and inheritance (for example, Hallowell et al, 2006). In relation to psychiatric diagnoses, Baart and Abma (2011) have mentioned how some family members who participated in a scientific psychiatric genetics project in the Netherlands initially resisted some of the non-monogenetic theories involving complex gene-environment models that emerged from the late 1990s onwards. "
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    • "Most of the participants claimed that they underwent the genetic test out of concern for their children. This reasoning is consistent with other studies [9–13]. We learned from Stuart’s story that he is concerned about his daughters’ cancer risk and is in need of information regarding their actual risks and risk reduction options. "
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    • "Furthermore, women sometimes colluded with their male relatives' blocking by restricting the flow of genetic information to these men, in bi-directional processes as described above. Thus, participants described interplay between men's and women's health communication roles that were more complex than the existing genetic literature in which men are more commonly reported to have communication difficulties (Daly 2009; Hallowell et al. 2006; Kenen et al. 2004b; Stromsvik et al. 2009). We know from prior research that women often take the lead communication roles in HBOC families, that communications sometimes breaks down between the women and men in the family, and that many mutation-positive men express a desire to keep their genetic information private, perhaps due to strong emotional reactions, traditional male gender identity and communication roles, or fear of stigmatization (Daly 2009; Forrest et al. 2003; Stromsvik et al. 2009). "
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