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Introduction: Encouraging family communication about possible genetic risk has become among the most important avenues for achieving the full potential of genomic discovery for primary and secondary prevention. Yet, effective family-wide risk communication (i.e., conveying genetic risk status and its meaning for other family members) remains a critical gap in the field. We aim to describe the iterative process of developing a scalable population-based communication outreach intervention, Your Family Connects, to reach ovarian cancer survivors and close relatives to communicate the potential for inherited risk and to consider genetic counseling. Methods: Relational-level theories (e.g., interdependence theory) suggest that interventions to promote family cancer risk communication will be most effective if they consider the qualities of specific relationships and activate motives to preserve the relationship. Informed by these theories, we collaborated with 14 citizen scientists (survivors of ovarian cancer or relatives) and collected 261 surveys and 39 structured interviews over 12 weeks of citizen science activities in 2020. Results: The citizen science findings and consideration of relational-level theories informed the content and implementation of Your Family Connects (www.yourfamilyconnects.org). CS results showed survivors favor personal contact with close relatives, but relatives were open to alternative contact methods, such as through health professionals. Recognizing the need for varied approaches based on relationship dynamics, we implemented a relative contact menu to enable survivors identify at-risk relatives and provide multiple contact options (i.e., survivor contact, health professional contact, and delayed contact). In line with relational autonomy principles, we included pros and cons for each option, assisting survivors in choosing suitable contact methods for each relative. Discussion: Our developed intervention represents a novel application of relational-level theories and partnership with citizen scientists to expand genetic services reach to increase the likelihood for fair distribution of cancer genomic advances. The Your Family Connects intervention as part of a randomized trial in collaboration with the Georgia Cancer Registry compared with standard outreach. [ABSTRACT FROM AUTHOR]

Background: Inherited risk is a family issue. Identifying family members who carry a pathogenic genetic variant that increases risk of cancers and other chronic diseases can be lifesaving for those affected.Objective: The research questions are: (1) which family communication frameworks have been applied, (2) how do intervention strategies employed map to these theories, and (3) to what extent were families receptive to these strategies and communication increased?Methods: Manuscripts published between January 2010 and August 2020 were searched in three databases: PubMed, PsycINFO, and Web of Science.Results: Nine intervention trials were identified. All interventions were evaluated in clinical genetic counseling contexts using at least one individual-level strategy (e.g. increase knowledge). Only three focused on dyadic conversations such as preparing for relatives' information needs.Conclusions: This systematic review posed the question whether theoretically based approaches have been applied to foster family genetic risk communication. Greater attention needs to be paid to the utilization of dyadic level and family system level theories to guide intervention developments.Practical Implications: We conclude by calling for accelerating and broadening the development of interventions to enable family communication about inherited risk that are theory-based, incorporate family-systems thinking, and are conducted outside of specialty clinic settings. [ABSTRACT FROM AUTHOR]

Purpose: In this brief report, we ask whether women's interpretation of breast cancer risk based on their low likelihood of carrying a BRCA1/2 mutation is associated with their information-sharing behavior, and whether misinterpretation is associated with motives for sharing the result. Methods: Women in mammography clinics who completed a brief family history assessment and deemed to be at low likelihood of carrying a BRCA1/2 mutation were asked to complete a 1-time online survey between June 2016 and January 2017. Results: One-third (44/148) of women shared their family history screen result with someone in their social network. Result information was shared largely with a first-degree female relative to express feelings of relief (77%, 33/43). There were no differences in likelihood of sharing based on breast cancer risk interpretation. However, women who misinterpreted the implications of the result for general breast cancer risk reported more motives to share the result with their social network than those who accurately interpreted their breast cancer risk. Conclusions: As family history-based screening for hereditary breast cancer is broadly implemented, the communication needs of the majority of women who will be unlikely of carrying a BRCA1/2 mutation must be considered. The motives of women who misinterpreted the implications of this result for breast cancer risk suggest the possibility that miscommunication could be spread to the broader family network. [ABSTRACT FROM AUTHOR]