Genetic Counseling Risk, Communication, and Decision Making in Genetic Counseling: Part C of Annual Review of Birth Defects, 1978 Charles J. Epstein Cynthia J. R. Curry Seymour Packman Sanford Sherman Bryan D. Hall

BioScience ◽  
1980 ◽  
Vol 30 (12) ◽  
pp. 844-844
Author(s):  
Laird G. Jackson
2020 ◽  
Vol 41 (1) ◽  
pp. 51-59
Author(s):  
Gisèle Diendéré ◽  
Imen Farhat ◽  
Holly Witteman ◽  
Ruth Ndjaboue

Background Measuring shared decision making (SDM) in clinical practice is important to improve the quality of health care. Measurement can be done by trained observers and by people participating in the clinical encounter, namely, patients. This study aimed to describe the correlations between patients’ and observers’ ratings of SDM using 2 validated and 2 nonvalidated SDM measures in clinical consultations. Methods In this cross-sectional study, we recruited 238 complete dyads of health professionals and patients in 5 university-affiliated family medicine clinics in Canada. Participants completed self-administered questionnaires before and after audio-recorded medical consultations. Observers rated the occurrence of SDM during medical consultations using both the validated OPTION-5 (the 5-item “observing patient involvement” score) and binary questions on risk communication and values clarification (RCVC-observer). Patients rated SDM using both the 9-item Shared Decision-Making Questionnaire (SDM-Q9) and binary questions on risk communication and values clarification (RCVC-patient). Results Agreement was low between observers’ and patients’ ratings of SDM using validated OPTION-5 and SDM-Q9, respectively (ρ = 0.07; P = 0.38). Observers’ ratings using RCVC-observer were correlated to patients’ ratings using either SDM-Q9 ( rpb = −0.16; P = 0.01) or RCVC-patients ( rpb = 0.24; P = 0.03). Observers’ OPTION-5 scores and patients’ ratings using RCVC-questions were moderately correlated ( rφ = 0.33; P = 0.04). Conclusion There was moderate to no alignment between observers’ and patients’ ratings of SDM using both validated and nonvalidated measures. This lack of strong correlation emphasizes that observer and patient perspectives are not interchangeable. When assessing the presence, absence, or extent of SDM, it is important to clearly state whose perspectives are reflected.


2019 ◽  
Vol 111 (1) ◽  
pp. 132-137.e1 ◽  
Author(s):  
Andria G. Besser ◽  
David H. McCulloh ◽  
James A. Grifo

2008 ◽  
Vol 9 (4_suppl) ◽  
pp. 13S-17S ◽  
Author(s):  
Barbara Reynolds ◽  
Sandra Crouse Quinn

During a crisis, an open and empathetic style of communication that engenders the public's trust is the most effective when officials are attempting to galvanize the population to take a positive action or refrain from a harmful act. Although trust is imperative in a crisis, public suspicions of scientific experts and government are increasing for a variety of reasons, including access to more sources of conflicting information, a reduction in the use of scientific reasoning in decision making, and political infighting. Trust and credibility—which are demonstrated through empathy and caring, competence and expertise, honesty and openness, and dedication and commitment—are essential elements of persuasive communication.


2000 ◽  
Vol 26 (6) ◽  
pp. 611-612 ◽  
Author(s):  
Mirella Filocamo ◽  
Gloria Bonuccelli ◽  
Raffaella Mazzotti ◽  
Fabio Corsolini ◽  
Marina Stroppiano ◽  
...  

PEDIATRICS ◽  
1994 ◽  
Vol 93 (6) ◽  
pp. 1010-1015
Author(s):  

Pediatricians may be called upon to counsel a family in which prenatal diagnosis is being considered or in which there is a fetus with a genetic disorder. In some settings, the pediatrician may be the primary resource for counseling the family. More frequently, counseling may already have been provided by a clinical geneticist and/or obstetrician. However, because of a previous relationship with the family, the pediatrician may be called upon to review this information and to assist the family in the decision-making process. The pediatrician should be familiar with the principles of prenatal genetic diagnosis and know how to apply them to specific problems in genetic counseling, diagnosis, and management in clinical practice. At the same time, pediatricians should be familiar with resources available in their region for obtaining information about whether and how a specific disorder can be diagnosed and when and where to refer patients for prenatal genetic diagnosis. The technology of prenatal diagnosis is changing rapidly, and genetic consultants can assist pediatricians in the appropriate utilization and interpretation of the diagnostic tests that are available.


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