An exploration of the communication preferences regarding genetic testing in individuals from families with identified breast/ovarian cancer mutations

Ratnayake, Paboda; Wakefield, Claire E.; Meiser, Bettina; Suthers, Graeme; Price, Melanie A.; Duffy, Jessica; Tucker, Kathy

doi:10.1007/s10689-010-9383-0

Cited by 32 publications

(38 citation statements)

References 26 publications

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“…In terms of the effect of gender on familial risk communication, we found conflicting results. For the entire sample we found no gender difference, which is consistent with some of the previous research on communication of hereditary cancer syndrome risk (Aktan-Collan et al, 2011;Ishii et al, 2011;McGivern et al, 2004;Patenaude et al, 2006;Ratnayake et al, 2011;Stoffel et al, 2008;Vos et al, 2011). However, our findings from the regression analysis showed that women were more likely than men to have communicated with all their at-risk relatives.…”

Section: Predictors Of Family Communicationsupporting

confidence: 90%

Family Communication in a Population at Risk for Hypertrophic Cardiomyopathy

Batte

Sheldon

Arscott

et al. 2014

Journal of Genetic Counseling

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Encouraging family communication is an integral component of genetic counseling; therefore, we sought to identify factors impacting communication to family members at risk for Hypertrophic Cardiomyopathy (HCM). Participants (N = 383) completed an online survey assessing: 1) demographics (gender, genetic test results, HCM family history, and disease severity); 2) illness representations; 3) family functioning and cohesiveness; 4) coping styles; 5) comprehension of HCM autosomal dominant inheritance; and 6) communication of HCM risk information to at-risk relatives. Participants were a national sample of individuals with HCM, recruited through the Hypertrophic Cardiomyopathy Association. Data from 183 participants were analyzed using a logistic regression analysis, with family communication as a dichotomous dependent variable. We found that female gender and higher comprehension of autosomal dominant inheritance were significant predictors of participants' communication of HCM risk information to all their siblings and children. Our results suggest that utilizing interventions that promote patient comprehension (e.g., a teaching-focused model of genetic counseling) are important and may positively impact family communication within families with HCM.

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Section: Predictors Of Family Communicationsupporting

confidence: 90%

Family Communication in a Population at Risk for Hypertrophic Cardiomyopathy

Batte

Sheldon

Arscott

et al. 2014

Journal of Genetic Counseling

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“…Several studies stressed that transmission of genetic risk information depends on a variety of individual, social, and situational factors (Forrest et al, 2003;Gaff et al, 2005;Keenan et al, 2005;Mesters et al, 2005;Ratnayake et al, 2011). "Feelings" of being responsible for the well-being of others or even anticipated feelings of regret for causing harm were strong facilitators for disclosure.…”

Section: Disclosure (B2)mentioning

confidence: 99%

The Concept of “Genetic Responsibility” and Its Meanings: A Systematic Review of Qualitative Medical Sociology Literature

Leefmann

Schaper²,

Schicktanz³

2017

Front. Sociol.

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The acquisition of genetic information (GI) confronts both the affected individuals and healthcare providers with difficult, ambivalent decisions. Genetic responsibility (GR) has become a key concept in both ethical and socioempirical literature addressing how and by whom decision-making with respect to the morality of GI is approached. However, despite its prominence, the precise meaning of the concept of GR remains vague. Therefore, we conducted a systematic literature review on the usage of the concept of GR in qualitative, socioempirical studies, to identify the main interpretations and to provide conceptual clarification. The review identified 75 studies with primarily an Anglo-American setting. The studies focused on several agents: the individual, the family, the parent, the healthcare professional, and the institution and refer to the concept of GR on the basis of either a rational/principle-oriented approach or an affective/relational approach. A subtype of the rational/principle-oriented approach is the reactive approach. The review shows how the concept of GR is useful for analyzing and theorizing about socioempirical findings within qualitative socioempirical studies and also reveals conceptual deficits in terms of insufficient theoretical accuracy and heterogeneity, and in the rarity of reflection on cultural variance. The vagueness and multiplicity of meanings for GR in socioempirical studies can be avoided by more normative-theoretical explication of the underlying premises. This would provide a higher degree of differentiation of empirical findings. Thereby, the complex findings associated with the individual and social implications of genetic testing in empirical studies can be better addressed from a theoretical point of view and can subsequently have a stronger impact on normative and policy debates.

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“…32,33 Family communication barriers are also likely to limit mutation spreading within families in the clinic 34 and research environment. 35 If these barriers were identified and addressed early, family members could serve as advocates for each other's health and improve genetic testing uptake in disinclined family members. Improving family communication is challenging, but work in this area is promising.…”

Section: Discussionmentioning

confidence: 99%