How Often Do <i>BRCA</i> Mutation Carriers Tell Their Young Children of the Family's Risk for Cancer? A Study of Parental Disclosure of <i>BRCA</i> Mutations to Minors and Young Adults

Bradbury, Angela R.; Dignam, James J.; Ibe, Comfort N.; Auh, Sogyong; Hlubocky, Fay J.; Cummings, Shelly; White, Michael J. V.; Olopade, Olufunmilayo I.; Daugherty, Christopher K.

doi:10.1200/jco.2006.09.1900

Cited by 79 publications

(119 citation statements)

References 26 publications

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“…The incidences observed are in line with those previously reported in either cross-sectional or shorter-term follow-up studies. [20][21][22][23][24][25]27 These studies have also reported, similar to this study, more positive than negative family relationship effects. [20][21][22]24,27 Taken together, these results offer reassurance about potential family effects to individuals considering BRCA1/2 testing.…”

Section: Discussionsupporting

confidence: 89%

“…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. [20][21][22][23][24][25] Only a few studies were specifically conducted to quantify the effects of the genetic testing process on family relationships. [26][27][28] Data on the incidence of long term (i.e., >1 year) of family relationship effects after the receipt of test result are still lacking.…”

Section: Introductionmentioning

confidence: 99%

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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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Section: Discussionsupporting

confidence: 89%

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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“…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).Regarding disclosures to offspring, Bradbury et al (2007) noted that the majority of adult and late adolescent children were told about their parent's mutation or the hereditary risk of cancer. Parents were less likely to disclose this information to younger children (Patenaude et al, 2006;Bradbury et al, 2007).…”

mentioning

confidence: 90%

“…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). …”

mentioning

confidence: 99%

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

Douglas¹,

Hamilton

Grubs³

2009

Journal of Genetic Counseling

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Individuals with a personal or family history of cancer can pursue testing for mutations in BRCA1 and BRCA2, breast and ovarian cancer susceptibility genes, in order to help them make decisions about cancer risk-reducing surgeries and other management options. However, this genetic testing can also have emotional consequences, not only for the tested individual but also for his or her relatives since testing can provide risk information for them as well. Thus, this study investigated the impact of BRCA testing on family dynamics and family relationships. A qualitative research design was employed, in which a secondary analysis was conducted on interview transcripts. In the initial study, two open-ended, tape-recorded interviews were performed using grounded theory methodology with each of 12 participants approximately three years apart. All participants had tested positive for a mutation in either BRCA1 or BRCA2.Thematic analysis of interview transcripts was conducted in the current secondary analysis to characterize family relationships after BRCA testing. Three main themes were identified: 1.That the first in the family to have testing or seek genetic counseling takes on a special family role that can be difficult for them; 2. That discussions in the family, especially those associated with BRCA testing, often change after genetic testing; and 3. That individuals may feel more or less connected to certain family members after genetic testing has occurred in the family. These changes in family dynamics seem to depend on the family history of cancer, prior relationships within the family, emotional coping strategies of relatives, value placed on particular iv communication patterns, and sharing or not sharing the family's BRCA mutation. The results of this study highlight the profound changes in family life that can occur after BRCA testing.Health professionals can use the insight they gain from this study in their management of patients considering BRCA testing. This work also has public health relevance since it describes how genetic testing for susceptibility to a common disease can influence family dynamics. Such an understanding will be important as the genetic basis of common disease becomes better understood and tests for additional susceptibility genes become available. PREFACEFirst and foremost, I would like to acknowledge all of the participants in this study for sharing their experiences so openly. These individuals were truly an inspiration to me and have greatly The preliminary interviews were supported by a research grant to Dr. Rebekah J.Hamilton from Sigma Theta Tau International. INTRODUCTIONIn the 1990s, the discovery of the BRCA genes offered an explanation for the clustering of ovarian cancer and early onset breast cancer in some families. In these families, it was found that individuals who inherited a mutated copy of a BRCA gene had a lifetime risk of cancer much higher than that of the general population, while those who did not inherit a gene mutation had no elevated risk (Ford et al., ...

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“…However, the majority of the respondents who tested positive but did not share their results with their children had indicated that providing their children with information was a motivation for them to be tested, and so it is likely they will pass on this information when the children are older. Previous studies on families with inherited breast and ovarian cancers showed that the majority of parents (70-80%) discussed their genetic result with children of adult age, regardless of their carrier status 27,28 and the age of the children was positively associated with communication. Most parents who did not disclose their result did so because they thought their children were too young or immature.…”

Section: Discussionmentioning

confidence: 96%

Predictive genetic testing experience for myocilin primary open-angle glaucoma using the Australian and New Zealand Registry of Advanced Glaucoma

Souzeau

Glading

Keane

et al. 2014

Genetics in Medicine

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Purpose: Predictive genetic testing of relatives of known myocilin (MYOC) gene mutation carriers is an appropriate strategy to identify individuals at risk for glaucoma. It is likely to prevent irreversible blindness in this high-risk group because this treatable condition might otherwise be diagnosed late. The Australian and New Zealand Registry of Advanced Glaucoma has established genetic testing protocols for known glaucoma genes, including MYOC. Methods:Through the Australian and New Zealand Registry of Advanced Glaucoma, we investigated the experience of 40 unaffected individuals who had undergone predictive genetic testing for MYOC mutations through questionnaires. Results:The main motivations for being tested were (i) to make appropriate interventions and (ii) to reduce uncertainty. All our respondents perceived strong benefits, either medical or emotional, in being tested. However, different concerns were raised by the respondents that need to be addressed during counseling. Greater family awareness was reported by the majority of the respondents, and the ability to provide information to children was a strong motivation for being tested. Conclusion:This study provides valuable information on the personal and familial impacts of having predictive genetic testing for glaucoma, which will help health professionals to better address the issues faced by patients and provide them adequate support.

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How Often Do BRCA Mutation Carriers Tell Their Young Children of the Family's Risk for Cancer? A Study of Parental Disclosure of BRCA Mutations to Minors and Young Adults

Cited by 79 publications

References 26 publications

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

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

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

Predictive genetic testing experience for myocilin primary open-angle glaucoma using the Australian and New Zealand Registry of Advanced Glaucoma

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