Genetic counseling provides the translational link between the new technologies of testing and the ability of individuals to engage in a process of informed decision making. The dense and abstract nature of this information, coupled with the heightened anxiety of uncertainty and disease vulnerability that it suggests, can be overwhelming to counseling clients - both cognitively and emotionally. Outcome studies over the past 20 years have found that a significant proportion of information is misunderstood or poorly recalled; indeed, some investigators have warned that the genetic counseling experience may be a significant psychological stressor increasing rather than diminishing disease anxiety. Despite the critical role of the counseling process to client outcomes, few outcome studies have addressed the interactive verbal and emotional processes that comprise the communication of counseling sessions. Furthermore, ethnic minorities and low literate populations are largely underrepresented among users of genetic counseling services and little is known about how to best serve these populations. The current proposal is a two-phase study designed to address these critical issues. In Phase 1, 200 genetic counselors will be recruited from meetings of the National Society of Genetic Counseling (NSGC), or through regional centers, to be videotaped while interviewing trained simulated clients seeking services related to either a) prenatal test counseling for advanced maternal age and a positive family history for cystic fibrosis, or b) susceptibility testing for BRCA1 and BRCA2 gene mutations. Simulated clients who are African American or Caucasian females will be used in interviews singly or accompanied by a male simulator acting as the client's spouse during the session. Phase 2 of the study recruits 800 subjects from ethnically, geographically, and educationally diverse populations to view the videotaped counseling sessions while imagining they are the client or the spouse being counseled. In this way, the subjects will act as analogue clients (AC) to provide a proxy for client satisfaction with the interpersonal and informational aspects of the counselor's communication, comprehension and recall and measures of anxiety.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Research Project (R01)
Project #
1R01HG002688-01A1
Application #
6680033
Study Section
Special Emphasis Panel (ZRG1-ELSI-2 (90))
Program Officer
Ota Wang, Vivian
Project Start
2003-09-19
Project End
2006-12-31
Budget Start
2003-09-19
Budget End
2004-06-30
Support Year
1
Fiscal Year
2003
Total Cost
$729,318
Indirect Cost
Name
Johns Hopkins University
Department
Public Health & Prev Medicine
Type
Schools of Public Health
DUNS #
001910777
City
Baltimore
State
MD
Country
United States
Zip Code
21218
Schaa, Kendra L; Roter, Debra L; Biesecker, Barbara B et al. (2015) Genetic counselors' implicit racial attitudes and their relationship to communication. Health Psychol 34:111-9
Farrelly, Ellyn; Cho, Mildred K; Erby, Lori et al. (2012) Genetic counseling for prenatal testing: where is the discussion about disability? J Genet Couns 21:814-24
Erby, Lori A H; Roter, Debra L; Biesecker, Barbara B (2011) Examination of standardized patient performance: accuracy and consistency of six standardized patients over time. Patient Educ Couns 85:194-200
Portnoy, David B; Roter, Debra; Erby, Lori H (2010) The role of numeracy on client knowledge in BRCA genetic counseling. Patient Educ Couns 81:131-6
Roter, Debra L; Erby, Lori; Larson, Susan et al. (2009) Oral literacy demand of prenatal genetic counseling dialogue: Predictors of learning. Patient Educ Couns 75:392-7
Mathur, Divya; Danford, Timothy W; Boyer, Laurie A et al. (2008) Analysis of the mouse embryonic stem cell regulatory networks obtained by ChIP-chip and ChIP-PET. Genome Biol 9:R126
Erby, Lori H; Roter, Debra; Larson, Susan et al. (2008) The rapid estimate of adult literacy in genetics (REAL-G): a means to assess literacy deficits in the context of genetics. Am J Med Genet A 146A:174-81
Roter, Debra L; Erby, Lori H; Larson, Susan et al. (2007) Assessing oral literacy demand in genetic counseling dialogue: preliminary test of a conceptual framework. Soc Sci Med 65:1442-57
Roter, D; Ellington, L; Erby, L Hamby et al. (2006) The Genetic Counseling Video Project (GCVP): models of practice. Am J Med Genet C Semin Med Genet 142C:209-20