Objective: To examine the role of the practitioner, informed consent, and genetic counseling in genetic testing decisions and to assess their relative influence on women’s decision to have clinical BRCA1/2 testing. Methods: Qualitative study using in-depth open-ended interviews with 68 women who had considered clinical BRCA1/2 testing. Results: Slightly less than half of the women who had considered BRCA1/2 testing were found to have had a clear and preexisting desire to test or not to test, irrespective of practitioner attitude or advice. Conclusion: The decision to accept or decline genetic testing is the result of a complex process that goes beyond interactions between health care providers and patients, indicating a caution against exclusive reliance on informed consent or counseling encounters.

1.
Statement of the American Society of Clinical Oncology: genetic testing for cancer susceptibility, adopted on February 20, 1996. J Clin Oncol 1996;14:1730–1736.
2.
Armstrong K, Weber B, Ubel PA, Guerra C, Schwartz JS: Interest in BRCA 1/2 testing in a primary care population. Prev Med 2002;34:590–595.
3.
Audrain J, Rimer B, Cella D, Garber J, Peshkin BN, Ellis J, Schildkraut J, Stefanek M, Vogel V, Lerman C: Genetic counseling and testing for breast-ovarian cancer susceptibility: what do women want? J Clin Oncol 1998;16:133–138.
4.
Bernhardt B, Geller G, Doksum T, Metz SA: Evaluation of nurses and genetic counselors as providers of education about breast cancer susceptibility testing. Oncol Nurs Forum 2000;27:33–39.
5.
Gwyn K, Vernon S, Conoley P: Intention to pursue genetic testing for breast cancer among women due for screening mammography. Cancer Epidemiol Biomarkers Prev 2003;12:96–102.
6.
Thompson H, Valdimarsdottir HB, Duteau-Buck C, Guevarra J, Bovbjerg DH, Richmond-Avellaneda C, Amarel D, Godfrey D, Brown K, Offit K: Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women. Cancer Epidemiol Biomarkers Prev 2002;11:1579–1585.
7.
Armstrong K, Calzone K, Stopfer J, Fitzgerald G, Coyne J, Weber B: Factors associated with decisions about clinical BRCA 1/2 testing. Cancer Epidemiol Biomarkers Prev 2000;9:1251–1254.
8.
Biesecker B, Ishibe N, Hadley DW, Giambarresi TR, Kase RG, Lerman C, Struewing JP: Psychosocial factors predicting BRCA1/BRCA2 testing decisions in members of hereditary breast and ovarian cancer families. Am J Med Genet 2000;93:257–263.
9.
Botkin J, Smith KR, Croyle RT, Baty BJ, Wylie JE, Dutson D, Chan A, Hamann HA, Lerman C, McDonald J, Venne V, Ward JH, Lyon E: Genetic testing for a BRCA 1 mutation: prophylactic surgery and screening behavior in women 2 years post testing. Am J Med Genet A 2003;118:201–209.
10.
Armstrong K, Weiner J, Weber B, Asch DA: Early adoption of BRCA 1/2 testing: who and why. Genet Med 2003;5:92–98.
11.
Lerman C, Narod S, Schulman K, Hughes C, Gomez-Caminero A, Bonney G, Gold K, Trock B, Main D, Lynch J, Fulmore C, Snyder C, Lemon SJ, Conway T, Tonin P, Lenoir G, Lynch H: BRCA 1 testing in families with hereditary breast-ovarian cancer: a prospective study of patient decision making and outcomes. JAMA 1996;275:1885–1892.
12.
Bernard H, Kilworth P,Kronenfeld D, Sailer L: The problem of informant accuracy: the validity of retrospective data. Ann Rev Anthropol 1984;13:495–517.
13.
Cho M, Sankar P, Wolpe PR, Godmilow L: Commercialization of BRCA 1/2 testing: practitioner awareness and use of a new genetic test. Am J Med Genet 1999;83:157–163.
14.
Berney L, Blane D: Collecting retrospective data: accuracy of recall after 50 years judged against historical records. Soc Sci Med 1997;45:1519–1525.
15.
Crisanti A, Laygo R, Junginger J: A review of the validity of self-reported arrests among persons with mental illness. Curr Opin Psychiatry 2003;16:565–569.
16.
Jenkins G, Merz J, Sankar P: A qualitative study of women’s views on medical confidentiality. J Med Ethics 2005;31:499–504.
17.
Andrews L, Meiser B, Apicella C, Tucker K: Psychological impact of genetic testing for breast cancer susceptibility in women of Ashkenazi Jewish background: a prospective study. Genet Test 2004;8:240–247.
18.
Halbert CH, Schwartz MD, Wenzel L, Narod S, Peshkin BN, Cella D, Lerman C: Predictors of cognitive appraisals following genetic testing for BRCA1 and BRCA2 mutations. J Behav Med 2004;27:373–392.
19.
McInerney-Leo A, Biesecker BB, Hadley DW, Kase RG, Giambarresi TR, Johnson E, Lerman C, Struewing JP: BRCA1/2 testing in hereditary breast and ovarian cancer families: Effectiveness of problem-solving training as a counseling intervention. Am J Med Genet A 2004;130:221–227.
20.
Armstrong K, Stopfer J, Calzone K, Fitzgerald G, Coyne J, Weber B: What does my doctor think? Preferences for knowing the doctor’s opinion among women considering clinical testing for BRCA 1/2 mutations. Genet Test 2002;6:115–118.
21.
American Society of Clinical Oncology: Policy statement update: genetic testing for cancer susceptibility. J Clin Oncol 2003;21:2397–2406.
22.
Peterson E, Milliron KJ, Lewis KE, Goold SD, Merajver SD: Health insurance and discrimination concerns and BRCA 1/2 testing in a clinic population. Cancer Epidemiol Biomarkers Prev 2002;11:79–87.
Copyright / Drug Dosage / Disclaimer
Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.
You do not currently have access to this content.