Communicating genetic risk information within families: a review

Abstract

This review of family communication of genetic risk information addresses questions of what the functions and influences on communication are; what, who and how family members are told about genetic risk information; what the impact for counsellee, relative and relationships are; whether there are differences by gender and condition; and what theories and methodologies are used. A systematic search strategy identified peer-reviewed journal articles published 1985-2009 using a mixture of methodologies. A Narrative Synthesis was used to extract and summarise data relevant to the research questions. This review identified 33 articles which found a consistent pattern of findings that communication about genetic risk within families is influenced by individual beliefs about the desirability of communicating genetic risk and by closeness of relationships within the family. None of the studies directly investigated the impact of communication on counsellees or their families, differences according to gender of counsellee or by condition nor alternative methods of communication with relatives. The findings mainly apply to late onset conditions such as Hereditary Breast and Ovarian Cancer. The most frequently used theory was Family Systems Theory and methods were generally qualitative. This review points to multifactorial influences on who is communicated with in families and what they are told about genetic risk information. Further research is required to investigate the impact of genetic risk information on family systems and differences between genders and conditions.

How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence

“…This raises ethical issues for health professionals and services, as their degree of responsibility for ensuring relatives' awareness of their risks -and the extent to which they should be proactive in this task -have long been debated in genetic health care. 16,17 Previous reviews have been published on the process and outcomes of communication of genetic information within families, [18][19][20] including the communication between children and their parents, 21 the factors influencing patterns of intrafamilial communication and awareness, 22,23 and on the analysis of the communication between genetic specialists and patients. 24 However, to our knowledge there has been no systematic review of studies that have analysed how family communication of information about genetic risks is addressed in genetic counselling practice.…”

Development of the Informing Relatives Inventory (IRI): Assessing Index Patients’ Knowledge, Motivation and Self-Efficacy Regarding the Disclosure of Hereditary Cancer Risk Information to Relatives

“…Counselees indeed feel generally obliged to disclose genetic risk information to relatives [5][6][7]. However, they do not always succeed in correctly informing all relevant relatives [8][9][10][11][12].…”

“…Many studies have shown that genetic risk information is often poorly understood and retained [21][22][23]. A lack of motivation may be due to the desire to protect the relative or oneself, e.g., from negative reactions by the relative [7]. Counselees may consider a relative to be too old or too emotionally fragile to burden them with genetic cancer information [20].…”

“…Counselees may consider a relative to be too old or too emotionally fragile to burden them with genetic cancer information [20]. In addition, complex family relations may prevent counselees from disclosing information [7,12,19]. A lack of self-efficacy may lead to counselees feeling unable to inform relatives.…”

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

“…Determination of the relevant factors which predispose to positive effects should be addressed in future research on the manner of telling, the information conveyed, and subsequent discussions about hereditary cancer. 1 Because previous research efforts have tended to focus on negative effects, 60 we suggest that studying positive and neutral effects is just as important. A better understanding of how BRCA1/2 testing can positively affect family dynamics may suggest strategies for genetic service providers to help individuals get the greatest benefit from their testing experience and relieve the burden of concern for those considering testing about the impact of family disclosure on relationships with close relatives.…”