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A family genetic risk communication framework: guiding tool development in genetics health services

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Abstract

Family communication of genetic risk information is a complex process. Currently, there are no evidence-based interventions to help genetics professionals facilitate the process of disclosure within families. This study was designed to create a framework to assist in the development of tools to support patients in communicating genetic risk information to family members. A systematic review identified the factors relevant in communicating genetic risk information in families. A guiding theory for the proposed framework was selected and populated with the factors identified from the review. The review identified 112 factors of relevance. The theory of planned behaviour was selected to guide framework development, organising the framework in terms of the patient’s attitudes about disclosure, perceived pressure to disclose and perceived control over disclosure. Attitudes about disclosure are influenced by a desire to protect oneself or family members, and the patient’s perceptions of relevance of the information for family members, responsibility to disclose, family members’ rights to information and the usefulness of communicating. Perceived pressure to disclose information is shaped by genetic professionals, family members and society. Perceived control over disclosure is affected by family relationships/dynamics, personal communication skills, the ability of the patient and family to understand the information and coping skills of the patient and family member. The family genetic risk communication framework presents a concise synthesis of the evidence on family communication of genetic information; it may be useful in creating and evaluating tools to help genetic counsellors and patients with communication issues.

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Authors and Affiliations

  1. CF Health Services Group Headquarters, Department of National Defence, 1745 Alta Vista Drive, Ottawa, ON, Canada, K1A 0K6

    Miriam E. Wiens

  2. Department of Epidemiology and Community Medicine, Faculty of Medicine, University of Ottawa, 451 Smyth Road, Ottawa, ON, Canada, K1H 8M5

    Brenda J. Wilson

  3. Children’s Hospital of Eastern Ontario Genetics Department, 401 Smyth Road, Ottawa, ON, Canada, K1H 8L1

    Christina Honeywell

  4. Eastern Health, Clinical Epidemiology, Faculty of Medicine, Memorial University, 300 Prince Phillip Drive, Level 1, Health Sciences Centre, St. John’s, NL, Canada, A1B 3V6

    Holly Etchegary

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  1. Miriam E. Wiens
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Correspondence to Miriam E. Wiens.

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Wiens, M.E., Wilson, B.J., Honeywell, C. et al. A family genetic risk communication framework: guiding tool development in genetics health services. J Community Genet 4, 233–242 (2013). https://doi.org/10.1007/s12687-012-0134-9

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  • DOI: https://doi.org/10.1007/s12687-012-0134-9

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