Process and outcome in communication of genetic information within families: a systematic review

Abstract

The communication of risk is a central activity in clinical genetics, with genetic health professionals encouraging the dissemination of relevant information by individuals to their at-risk family members. To understand the process by which communication occurs as well as its outcomes, a systematic review of actual communication in families about genetic risk was conducted. Findings from 29 papers meeting the inclusion criteria were summarised and are presented narratively. Family communication about genetic risk is described as a deliberative process, in which: sense is made of personal risk; the vulnerability and receptivity of the family member is assessed; decisions are made about what will be conveyed; and the right time to disclose is selected. The communication strategy adopted will depend on these factors and varies within families as well as between families. Inherent in these processes are conflicting senses of responsibility: to provide potentially valuable information and to prevent harm that may arise from this knowledge. However, the research 'outcomes' of communication have been professionally determined (number of relatives reported as informed, uptake of testing, knowledge of the recipient) and are typically unrelated to the concerns of the family member. The impact of communication on the individual, family members, and family relationships is of concern to the individual conveying the information, but this is largely self-reported. Currently, there is insufficient information to inform the development of theoretically and empirically based practice to foster 'good' communication. The implications for future research are discussed.

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

“…15communication with relatives and the consultand's autonomous decision-making (nondirective), counselling on this specific topic does not mean just presenting full and unbiased information as something that can be passed, unaltered, from person to person in the family; this is especially salient in families where parents are considering whether and how to communicate genetic information to their young adult children. As others have argued, 1,18 family communication about genetics is a multistage process that requires genetic information to be understood beyond simplistic models of communication. The voicing by both consultand and professionals of their perspectives and some dialogue about the differences has been proposed as a helpful way for professionals to consider when it may be unhelpful and inappropriate for them to challenge the consultand and where, in contrast, it may be very useful for them to contribute more proactively with their perspective, without coercion and without denying the critical importance of the patient's wider value systems.…”

“…38,46 The complexity of family functioning perhaps makes it more fruitful and more ethical for professionals to be open to address these issues using more contextual strategies. 18 The family genetic risk communication framework 48 may be of help in the clinical context as an orienting tool to work with consultands through their communication process. Clinical genetic services and the health-care system more broadly might also want to consider the specificities of the communication throughout the family's life cycle, 49 namely between parents and children/young adults, 50 both in the context of genetic counselling practice and in the facilitation of family-oriented psychosocial support.…”

“…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.…”

Outcomes of a randomised controlled trial of a complex genetic counselling intervention to improve family communication

“…1 Effective family communication occurs less frequently than is optimal with some estimates suggesting that only 15-20% at-risk relatives become aware of relevant and important information. [2][3][4] Family members usually express a desire to pass on this information themselves 5,6 with support from health professionals, if necessary, to explain more complicated concepts. 7 It seems likely that most relatives would intend to pass on genetic risk information and that, where this does not occur (non-disclosure), this is usually a 'passive' failure to disclose rather than the proband actively avoiding communication.…”

“…There has been much debate about how health professionals should be involved with this process; the extent to which this is deemed important appears to vary according to the information that can be made available and the condition that is involved. 2,9 Two previous Australian studies have explored how professionals might assist in family communication about genetics. One study involving letters sent from the genetics service, via the proband or directly to relatives, found that there was an increase in uptake of genetic testing by relatives from 23% in the group dependent on communication by the proband to 40% in the group receiving information directly.…”