The impact of proband mediated information dissemination in families with a BRCA1/2 gene mutation

Sermijn, Erica; Goelen, Guido; Teugels, Erik; Kaufman, Leonard; Bonduelle, M; Neyns, Bart; Poppe, Bruce; Paepe, Anne De; Grève, Jacques De

doi:10.1136/jmg.2003.011353

Cited by 56 publications

(60 citation statements)

References 30 publications

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“…17 These findings support the view that the desire of male members of BRCA 1/2 families to be aware of HBOC risk may be underestimated. 18 Men with HBOC genetic risk information are more likely to communicate noncarrier status, whereas women communicate carrier and noncarrier status fairly equally; meaning perhaps that men are more comfortable sharing good news than bad. 14 In HBOC families, there is evidence that men use avoidance as a coping strategy.…”

Section: Gendermentioning

confidence: 99%

“…17 There is generally more anxiety over HBOC risk for female than male descendants. 16,18 However, men with a BRCA 1/2 mutation are at risk of developing breast cancer (although a lesser risk) and other forms of cancer, 33 and are at risk of passing the mutation to their offspring. HBOC genetic risk information was found to be more likely to be communicated with a male sibling if he had daughters, and even then the communication tended to be indirect, through a sister-in-law.…”

Section: Gendermentioning

confidence: 99%

“…6,14 -16 There is also evidence that involvement of family members in the testing process at an early stage, rather than after results have been returned, may minimizse anxiety associated with the information. 17,18 Personal feelings Some studies report feelings of guilt around disclosing HBOC genetic information. 7,19 Feelings of guilt may relate to being the bearer of perceived 'bad news', 20 arise with respect to disclosing to a parent who will experience remorse at the knowledge of having passed on a genetic mutation, or be associated with having potentially passed on a genetic condition to offspring.…”

Section: Timing Of Communicationmentioning

confidence: 99%

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Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information

2009

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What factors influence intrafamilial communication of hereditary breast and ovarian cancer (HBOC) genetic risk information? Such information can have health implications for individuals who undergo genetic testing, but it can also have implications for their blood relatives. This literature review adopts an ecological model to summarize factors at the individual, familial, and community levels, as well as cross cutting factors relating to the complexity of HBOC genetic information and responsibilities that this information can give rise to. These factors are complex and may result in conflicting senses of responsibility. Faced with the task of communicating HBOC genetic information, the response may be to attempt to balance the potential negative impact of the information on the well-being of the informee (eg, can s/he handle this information?) against the potential health benefit that the knowledge could result in. This balancing represents an effort to reconcile conflicting approaches to protecting family members, and is a moral dilemma. This review sheds light on the factors that contribute to resolve this dilemma. Keywords: BRCA 1/2; ecological; hereditary breast and ovarian cancer; genetic information; family; communication IntroductionHereditary breast and ovarian cancer (HBOC) genetic information has relevance not only for those who undergo genetic testing, but also for their genetic relatives. In light of this, intrafamilial communication of HBOC genetic information is important; but it is also highly complex and many factors weigh into the decision to communicate and the process of communication. This article is a review of factors influencing intrafamilial communication of HBOC genetic information. We adopt an 'ecological' model to categorize influencing factors at the individual, familial and community levels. Cross-cutting factors are also included, such as the complexity of the information and responsibilities that the information can give rise to (see Table 1). Improving the understanding of the factors that influence intrafamilial communication of genetic information may serve to guide genetics professionals and patients in decision making when it comes to intrafamilial communication and assist in the development of policy in this area. It may also help to guide the development of guidelines, particularly as there is a lack of guidance dealing specifically with intrafamilial communication of HBOC genetic information and genetic information more generally. This is especially important given the rapid development of new technologies for generating genetic information and the potential impact of this increase in information on families. This review is undertaken in the context of HBOC genetic information that living adults obtain in a clinical context. It does not consider communication with minor children, information about deceased adults or information generated in a research context. It also excludes studies of or theories on direct communication with family members by health professionals, 1,2 c...

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Section: Gendermentioning

confidence: 99%

Section: Gendermentioning

confidence: 99%

Section: Timing Of Communicationmentioning

confidence: 99%

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Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information

2009

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“…1,2 This encouragement is widely accepted as current practice, and, in some genetic services, it may be the only guidance or support individuals receive from genetic health professionals about communicating genetic information to their family members. However, debate about the genetic health professional's role regarding the adequacy of support for families stems from ethical and medicolegal positions about possible implications for uninformed at-risk family members.…”

Section: Introductionmentioning

confidence: 99%

Health first, genetics second: exploring families' experiences of communicating genetic information

et al. 2008

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Genetic information may have health and reproductive implications for the proband and their family members. The responsibility for communicating this information within families generally lies with the proband or consultand. Previous research has explored the barriers and facilitators to communication, particularly in families affected with familial cancer syndromes. This study is an exploration of families' experiences, which aims to elucidate the process of communicating genetic information in families affected with non-cancer genetic conditions. The methodology involved 12 semi-structured interviews with probands, consultands and their family members. There were six different genetic conditions present in the families: adrenoleukodystrophy (n ¼ 3), cystic fibrosis (n ¼ 3), fragile X syndrome (n ¼ 1), haemochromatosis (n ¼ 1), balanced reciprocal chromosomal translocation (n ¼ 3) and Robertsonian chromosomal translocation (n ¼ 1). The results presented arise from two key themes, (1) the diagnosis and (2) post diagnosis. The interview data illustrate that the time of the diagnosis is a traumatic experience for families and that communication stimulated by this event revolves around informing family members about the diagnosis, but not warning them of their genetic risk. Post diagnosis, the collection of information about the genetic condition and continued communication to more distant family members, often using pre-existing family communication patterns, enables the continuation of communication about the genetic condition.

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“…11 Presently, family members carry responsibility for notifying relatives about the presence of cancer-predisposing mutation. 12,13 Some family members who have assumed the role of informant have encountered resistance to dispersion of information about familial mutations and sometimes feared to be the focus of resentment from relatives. 14 Previous studies have shown that individuals undergoing BRCA1/2 genetic testing share their test result with most, but not all, of their first-degree relatives quickly after it is disclosed.…”

Section: Introductionmentioning

confidence: 99%

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

Lapointe

Bouchard

Patenaude

et al. 2012

Genetics in Medicine

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Purpose:Little is known about the long-term impact of BRCA1/2 testing on the relationships between family members. We assessed the incidence of positive and negative family relationship effects of BRCA1/2 testing in the 3 years after result disclosure and identified predictors of these effects. methods:A total of 485 women and 67 men who had undergone BRCA1/2 testing were asked 3 years later whether having been tested had improved and/or disrupted relationships with their relatives. The associations with sociodemographic, medical, and psychosocial characteristics were assessed.Results: Globally, 85.1% did not report any positive or negative effects of genetic testing on family relationships. Positive and negative effects were reported by 13.2% and 3.7% of participants, respectively. Reporting positive relationship effects was associated with older age, intolerance for uncertainty, cancer-specific distress, and more social support. Low education, positive attitude toward prophylactic mastectomy, and low social support increased the likelihood of negative effects. conclusion: Our findings do not support the belief that family relationships are frequently disrupted by BRCA1/2 testing. Understanding that most family relationships are unchanged long term by genetic testing may help genetic service providers encourage those considering testing to overcome hesitancy related to potential difficulties of communicating results to relatives.Genet Med 2012:14(1):60-68

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The impact of proband mediated information dissemination in families with a BRCA1/2 gene mutation

Cited by 56 publications

References 30 publications

Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information

Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information

Health first, genetics second: exploring families' experiences of communicating genetic information

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

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