Genetic counselor opinions of, and experiences with telephone communication of BRCA1/2 test results

被引:36
作者
Bradbury, A. R. [1 ]
Patrick-Miller, L. [2 ]
Fetzer, D.
Egleston, B. [3 ]
Cummings, S. A. [4 ]
Forman, A.
Bealin, L.
Peterson, C.
Corbman, M.
O'Connell, J. [5 ]
Daly, M. B.
机构
[1] Fox Chase Canc Ctr, Family Risk Assessment Program, Dept Clin Genet, Philadelphia, PA 19111 USA
[2] Univ Med & Dent New Jersey, Robert Wood Johnson Med Sch, Canc Inst New Jersey, New Brunswick, NJ USA
[3] Fox Chase Canc Ctr, Biostat & Bioinformat Facil, Philadelphia, PA 19111 USA
[4] Univ Chicago, Dept Med, Chicago, IL 60637 USA
[5] VIRTUA Fox Chase Canc Program, Mt Holly, NJ USA
关键词
BRCA; 1; 2; communication; genetic counselors; genetic testing; telephone; BREAST-CANCER RISK; PATIENT; CONSEQUENCES; DISCLOSURE; MEDICINE; IMPACT;
D O I
10.1111/j.1399-0004.2010.01540.x
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
BRCA1/2 test disclosure has, historically, been conducted in-person by genetics professionals. Given increasing demand for, and access to, genetic testing, interest in telephone and Internet genetic services, including disclosure of test results, has increased. Semi-structured interviews with genetic counselors were conducted to determine interest in, and experiences with telephone disclosure of BRCA1/2 test results. Descriptive data are summarized with response proportions. One hundred and ninety-four genetic counselors completed self-administered surveys via the web. Although 98% had provided BRCA1/2 results by telephone, 77% had never provided pre-test counseling by telephone. Genetic counselors reported perceived advantages and disadvantages to telephone disclosure. Thirty-two percent of participants described experiences that made them question this practice. Genetic counselors more frequently reported discomfort with telephone disclosure of a positive result or variant of uncertain significance (p < 0.01) than other results. Overall, 73% of participants reported interest in telephone disclosure. Many genetic counselors have provided telephone disclosure, however, most, infrequently. Genetic counselors identify potential advantages and disadvantages to telephone disclosure, and recognize the potential for testing and patient factors to impact patient outcomes. Further research evaluating the impact of testing and patient factors on cognitive, affective, social and behavioral outcomes of alternative models of communicating genetic information is warranted.
引用
收藏
页码:125 / 131
页数:7
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