family communication, genetic testing, genetic counseling, genetic risk communication, precision medicine
Purpose: When a genetic disorder is discovered in an individual, it can have important implications for family members. To protect patients’ confidentiality, genetic practitioners attempt to inform at-risk family members by encouraging diagnosed individuals to share pertinent genetic information with their family; however, this method of communicating information is unreliable. Lack of information sharing results in at-risk family members and their primary care providers being uninformed about risk. Some have proposed direct communication between genetic practitioners and at-risk family members. The purpose of this systematic review is to synthesize current literature related to three research questions: (1) How do genetic practitioners help their patients share information with family members? (2) Are some genetic practitioners directly informing family members or their primary care providers? (3) Is there evidence of genetic practitioners reaching out to primary care providers of at-risk family members?
Methods: Relevant search terms were used to search the CINAHL, MedLine, PsychInfo, and Academic Search Premier databases for articles published in English between January 2014 and March 2018.
Results: We identified 532 records through database searches and 19 records through hand-searching. After removing duplicates and screening for inclusion criteria, 35 papers were assessed in our final review. Interventions designed to assist probands to communicate with family members do not improve outcomes. Interventions that called for genetic practitioners to share information directly with family members did improve family outcomes. There was no evidence of genetic practitioners providing information that could be used by family members’ primary care providers.
Conclusions: We recommend future research focused on family member outcomes including number of family members informed and family member comprehension of information shared.
The College of Nursing showcases some of our best evidence based scholarly papers from graduate students in the Family Nurse Practitioner Program. The papers address relevant clinical problems for advance practice nurses and are based on the best evidence available. Using a systematic approach students critically analyze and synthesize the research studies to determine the strength of the evidence regarding the clinical problem. Based on the findings, recommendations are made for clinical practice. The papers are published in professional journals and presented at professional meetings.
BYU ScholarsArchive Citation
Cope, Whitney A.; Himes, Deborah O.; and Peterson, Neil E., "Sharing Information in Families at Risk for Genetic Disorders: A Systematic Review of the Literature" (2018). All Student Publications. 236.
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Available for download on Monday, July 01, 2019