‘It's their blood not mine’: Who's responsible for (not) telling relatives about genetic risk?

Keenan, Karen Forrest; Simpson, Sheila A; Wilson, Brenda J.; Teijlingen, Edwin van; McKee, Lorna; Haites, Neva Elizabeth; Matthews, Eric

doi:10.1080/13698570500229606

Cited by 39 publications

(54 citation statements)

References 39 publications

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“…14 A study of support received from the 'significant others' of women from suspected HBOC families found that although sisters tended to share a close relationship, communication around HBOC could be limited and emotionally strained; male partners were supportive, but on their own terms, or with 'caveats'; and brothers were the most difficult to communicate with. 16 The study found that friends were the most unconditionally supportive group. 16 These findings call into question the relationship between communication and support.…”

Section: Proximity Of Relationshipmentioning

confidence: 96%

“…16 The study found that friends were the most unconditionally supportive group. 16 These findings call into question the relationship between communication and support. It may be that communication with partners and sisters is more common because support is 'expected' from them, but that the outcome does not always meet expectations.…”

Section: Proximity Of Relationshipmentioning

confidence: 96%

“…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%

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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: Proximity Of Relationshipmentioning

confidence: 96%

Section: Proximity Of Relationshipmentioning

confidence: 96%

Section: Gendermentioning

confidence: 99%

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

2009

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“…The relationships, including wider kin, which are given prominence through these developments are now described as 'risky' (Featherstone et al, 2006) and mobilised through a "web of genetic connectedness" (Novas & Rose, 2000). The significance of these relationships are reflected in the construction of risk and responsibility (Walter et al, 2004;Gaff et al, 2007) and in exploring adaptation and familial communication strategies (Forrest et al, 2003;Keenan et al, 2005, Gregory et al, 2007. However within these genetic networks, the obligations and responsibilities that members perform and display towards each other are complex.…”

Section: Introductionmentioning

confidence: 99%

Negotiating blame and responsibility in the context of a “de novo” mutation

Dimond

2014

New Genetics and Society

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This article examines the implications for parents and family members when a child is diagnosed with a genetic syndrome. In particular, it describes how practices of understanding are shaped when the syndrome occurs 'de novo', that is, when it has not been inherited from either parent and where there is no family history. Despite a significant body of research exploring the social implications of genetic disease and diagnostic technologies, sociological understandings of the implications of a de novo mutation are considerably limited. This article draws on semi-structured interviews conducted with twenty three parents of children diagnosed with 22q11 deletion syndrome, a syndrome associated with high rates of de novo cases. Three themes were identified: 'lay' understandings of genetics; making genetic connections and genetic gatekeeping. Overall, this article articulates and confirms the enduring significance of family for contextualising health and illness.

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“…A possible explanation could be that older individuals often assume a pivotal role within their family with respect to support and information sharing about genetic testing. 55 This role may create opportunities to experience positive effects on family relationships related to genetic testing by feeling efficacious about moving others to testing or to improved surveillance or surgery.…”

Section: Discussionmentioning

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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‘It's their blood not mine’: Who's responsible for (not) telling relatives about genetic risk?

Cited by 39 publications

References 39 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

Negotiating blame and responsibility in the context of a “de novo” mutation

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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