{"doi":"10.4079/ths2023.02","title":"Communicating Unexpected Genetic Information with Family Members: A Multimethod Study of Secondary Findings Recipients","abstract":"Background: Medically-actionable secondary genomic findings (SF) can be life- preserving or life-prolonging for recipients but this benefit can only extend to family members if this information is shared with relatives. How SF recipients communicate this important genetic information with relatives, barriers and facilitators to this process, and SF recipients’ lived experiences in communicating about their results over time remain largely unknown. Family communication is required for relatives of SF recipients to access cascade testing and the potential benefits of enhanced screening and management. Applying behavioral and implementation science theories and providing rich and deep descriptions of SF recipients’ lived experiences in sharing their results with relatives may lay the foundation for the development of future studies of interventions to optimize this process. Objective: The purpose of this study was to describe SF recipients’ lived experience of sharing their results with family members and characterize self-reported determinants of this process. Methods: This multimethod study was conducted in two Phases. In Phase 1, existing data from interviews of SF recipients was analyzed to characterize self-reported determinants of family communication. The COM-B (Michie et al., 2014) was employed as the theoretical framework for the thematic analysis of existing data to describe SF recipients’ capability, opportunity, and motivation to share their results with their relatives. A novel interview guide based on this analysis was also developed in Phase 1. In Phase 2 purposive sampling to emphasize diversity of family communication experiences was employed to conduct novel phenomenological interviews (Moustakas, 2011) with SF recipients to develop a deeper understanding of their lived experiences of sharing their results with their relatives over time. These data were also thematically analyzed and coded to describe textural and structural elements of the described lived experiences. A second coder, bracketing, and member-checking were employed to enhance trustworthiness of the data. Results: A codebook mapped to the COM-B constructs of Capability, Opportunity, and Motivation was developed to analyze existing interview transcripts from 40 participants in Phase 1 of the study. Over a quarter of participants (n=13) demonstrated poor or uncertain knowledge (Capability) of their SF. Interpersonal and social factors affecting family communication (Social Opportunity) were described by 32 participants and over half of participants (n=22) described emotional closeness as a facilitator of family communication. Physical proximity and frequency of contact (Physical Opportunity) were also cited as determinants of family communication. Participants commonly discussed a desire to help relatives as a Reflective","journal":null,"year":2023,"id":415519,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":0,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9571,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2023-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":390139,"name":"Julie C. Sapp","orcid":"0000-0002-4003-258X","position":0,"is_corresponding":true}],"reference_count":91,"raw_metadata":null,"created_at":"2026-07-19T01:22:12.933438Z","pmid":null,"pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}