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© 2000 American Society for Clinical Oncology
What Would You Do? Specialists’ Perspectives on Cancer Genetic Testing, Prophylactic Surgery, and Insurance DiscriminationFrom the Department of Genetics, Yale School of Medicine, and Cancer Genetic Counseling Shared Resources, Yale Cancer Center, Yale University, New Haven, CT. Address reprint requests to Ellen T. Matloff, MS, Cancer Genetic Counseling, Yale Cancer Center, Yale School of Medicine, 333 Cedar St, Box 208028, New Haven, CT 06520-8028; email ellen.matloff@ yale.edu.
PURPOSE: To examine what cancer genetics specialists predict they would do personally if they were at 50% risk of carrying a mutation that predisposes to hereditary breast/ovarian cancer (BRCA1/BRCA2) and hereditary nonpolyposis colon cancer (HNPCC). METHODS: Questionnaire survey of the membership of the National Society of Genetic Counselors (NSGC) Special Interest Group (SIG) in Cancer. RESULTS: Of the 296 active members of the NSGC Cancer-SIG surveyed, 163 (55%) responded. Eighty-five percent predicted that if they had a 50% risk of carrying a BRCA1/BRCA2 mutation, they would pursue genetic testing. If they tested positive for a mutation at age 35, 25% predicted they would pursue prophylactic bilateral mastectomies and 68%, prophylactic oophorectomy. Ninety-one percent of respondents believe they would pursue genetic testing for HNPCC, and 17% would elect prophylactic colectomy; 54%, prophylactic hysterectomy; and 52%, prophylactic oophorectomy if they tested positive for a mutation. The majority (68%) would not bill their insurance companies for genetic testing because of fear of discrimination, and 26% would use an alias when undergoing testing. Fifty-seven percent of counselors would seek professional psychologic support to help them cope with the results of testing. CONCLUSION: A large percentage of cancer genetic counseling providers predicted they would opt for prophylactic surgery at a young age if they carried a BRCA or HNPCC mutation, and most would seek professional psychologic assistance when undergoing testing. More than half of respondents would not bill their insurance companies for genetic testing, largely because of fear of genetic discrimination. The vast majority of those providers most familiar with cancer genetic testing and its associated medical, psychologic, and legal implications would still pursue genetic testing.
CLINICALLY BASED GENETIC testing for hereditary cancer syndromes is still a relatively new phenomenon, with widespread testing becoming available just within the past 4 years.1 The majority of cancer genetic testing is performed for the breast and ovarian cancer susceptibility genes (BRCA1 and BRCA2) and hereditary nonpolyposis colon cancer (HNPCC). Female carriers of BRCA1 and BRCA2 mutations have a 50% to 85% lifetime risk of developing breast cancer and between a 15% to 60% lifetime risk of developing ovarian cancer.2-10 Carriers of HNPCC mutations have a 65% to 85% lifetime risk of developing colon cancer, and female carriers have a 30% to 40% lifetime risk of uterine cancer and as great as a 10% risk of ovarian cancer.11,12 Options for carriers of BRCA1/BRCA2 and HNPCC mutations fall into three categories: early and frequent surveillance, chemoprevention, and prophylactic surgery. It is recommended that women at increased risk for breast cancer perform monthly breast self-examinations, have annual mammograms beginning at age 25, and have annual or semiannual clinical breast examinations.13 BRCA1/BRCA2 carriers may take tamoxifen in hopes of reducing their risks of developing breast cancer. However, although tamoxifen has been shown to be effective in reducing the risk of breast cancer in women with a positive family history of the disease, the efficacy of this intervention in BRCA1/BRCA2 carriers is still unknown.14 Prophylactic bilateral mastectomy is believed to reduce the risk of breast cancer by more than 90% in women at high risk for the disease15; however, the efficacy of this procedure in BRCA1/BRCA2 mutation carriers is unknown. Surveillance for ovarian cancer is more complex, with the recommended interventions being semiannual or annual transvaginal ultrasound scans and testing for CA-125 levels beginning between the ages of 25 and 35 years.13 The effectiveness of such surveillance in detecting ovarian cancers at early and more treatable stages has not been proved in any population. Oral contraceptives have been shown to reduce the risk of ovarian cancer in women carrying BRCA1/BRCA2 mutations.16 The impact of this intervention on breast cancer risk is not known. Prophylactic oophorectomy is currently the most effective means of reducing the risk of ovarian cancer,17,18 but even women who have had this procedure may develop primary peritoneal carcinoma.19,20 The standard surveillance method in carriers of HNPCC mutations is full colonoscopy to the cecum every 1 to 3 years beginning between the ages of 20 and 25 years.21 Although several studies are investigating chemopreventive options for colorectal cancer, no agents are currently approved for clinical use. Prophylactic subtotal colectomy with ileorectal anastomosis is an option for HNPCC carriers, and a decision analysis revealed that this procedure may offer slightly greater gains in life expectancy for young HNPCC carriers than would surveillance alone.22,23 Options for endometrial cancer surveillance include endometrial aspirate and transvaginal ultrasound procedures beginning between the ages of 25 and 35 years. The efficacy of such surveillance in HNPCC carriers is unknown. Oral contraceptives are known to reduce the risk of endometrial cancer in the general population,24 but the impact of this intervention in HNPCC carriers is unknown. Prophylactic transabdominal hysterectomy is also an option. Although this option is likely to significantly reduce the risk of uterine cancer, long-term prospective studies of the impact of this intervention on HNPCC carriers have not been performed. The area of predisposition testing for hereditary cancer syndromes is a controversial one and has been the subject of much debate. Concern has been raised that genetic testing may raise patients’ anxiety levels by providing predictive (not diagnostic) information that leaves them in the position of making life-altering decisions on the basis of risk estimates alone. Additionally, although there are options for surveillance, chemoprevention, and prophylactic surgery, none completely eliminates the risk of cancer. The myriad of difficult medical decisions that BRCA1/BRCA2 and HNPCC mutation carriers face is just part of the decision-making challenge. Many experts and patients fear that genetic discrimination by health, life, and disability insurance companies on the basis of a positive test result is also a serious potential hazard of testing.25,26 Fear of genetic discrimination by patients has been cited as a major deterrent to genetic testing.27-31 It is believed that consumer fear of genetic discrimination is out of proportion with the actual amount of discrimination experienced32; however, it is well known that current legislation aimed at protecting individuals from genetic discrimination is deficient in several areas.33 Because of the potential risks of psychologic and emotional harm to the patient, lack of long-term data on appropriate management plans, and genetic discrimination, some experts have questioned whether predictive testing for hereditary cancer syndromes is doing more harm than good.34-36 Because the field of cancer genetic counseling and testing is still in its infancy, long-term data weighing all the associated risks and benefits of the process are lacking. To date, those most experienced and familiar with the risks and benefits of predictive genetic testing for hereditary cancer are, arguably, the providers of such services. Such providers have first-hand experience with the testing process and the impact of testing on patients and their families. Although interest in and attitudes about genetic testing have been studied extensively in the general public and in high-risk individuals,37-43 no studies have examined these variables among providers of these services. Additionally, few studies have examined what providers of such services predict they would do if they were found to carry a cancer-susceptibility mutation. To fill this gap in the literature, we surveyed cancer genetic counselors regarding their predictions about what they would do if they were found to be at a 50% risk of carrying a BRCA1/BRCA2 or HNPCC mutation. We also examined their preferences for medical management should they be found to carry deleterious mutations, as well as their feelings about genetic discrimination and privacy.
In 1998, the 296 active members of the National Society of Genetic Counselors (NSGC) Special Interest Group (SIG) in Cancer were mailed questionnaires and self-addressed stamped envelopes in which the completed questionnaires were to be returned. The NSGC Cancer-SIG is the largest group of cancer genetic counselors in the world and the majority of the American Board of Genetic Counselors eligible/certified counselors who work in cancer genetics are members of this group. The questionnaires were anonymous and were mailed out one time only, without financial incentive for response. The questionnaires collected demographic information on respondents, including information regarding the amount of experience they had in cancer genetic counseling. The questionnaires provided respondents with short descriptions of clinical situations and asked them to predict how they would react in such a scenario (Tables 2 and 5). Specifically, respondents were asked to predict whether they would personally pursue genetic testing if they were found to be at a 50% risk of carrying a BRCA1/BRCA2 or HNPCC mutation. They were queried about their actions should they test positive for a deleterious mutation at the age of 35, assuming childbearing was completed. Male respondents were asked to answer what they would recommend to a close female blood relative in the same situation. Subjects were also asked how they would pay for genetic testing and why. Space was provided for respondents to provide open-ended qualitative comments to explain the basis for their decision-making. These comments were then grouped by topic by the authors.
Characteristics of the Study Sample Of the 296 active members of the NSGC-SIG surveyed, 163 (55%) responded. The majority of the respondents were female (93.3%) and between the ages of 24 and 49 years (87.8%). These demographics parallel those of the NSGC as a whole. Three quarters (76.1%) of respondents had a masters degree in genetic counseling, and half (49.4%) listed "cancer genetics" as their primary area of clinical focus (Table 1). Not all respondents answered each question, resulting in a less than 100% response rate for each scenario. Because of the open-ended qualitative nature of the "reasons for response" section, percentages could not be calculated for each reason because not all respondents wrote in an answer. However, the most prevalent reasons were grouped together and are reported under each section.
BRCA1/BRCA2 Eighty-five percent of counselors stated that they would pursue BRCA1/BRCA2 testing if found to be at a 50% risk of carrying a deleterious mutation (Table 2). The main reasons for pursuing testing included that this information would significantly change medical management and surveillance plans, help other family members, and reduce uncertainty. The 50% possibility of learning that they did not carry the mutation in the family was also cited as a reason to seek testing. Those who would not have testing stated that they feared genetic discrimination and/or that the information would not affect their medical management at this time. If they tested positive for a BRCA1/BRCA2 mutation at the age of 35, 24.5% of respondents predicted they would have their breasts removed as a prophylactic measure (Table 2). The reasons for such actions included decreasing the risk of breast cancer development as much as possible, avoiding the fear and worry associated with waiting for cancer to develop, and a lack of confidence in the ability of surveillance methods to detect breast cancer in its early stages. In those who would not chose prophylactic mastectomies, the reasons included confidence that surveillance can detect breast cancer in an early, treatable stage, the preference for chemoprevention with tamoxifen, the negative impact of such surgery on body image and sexuality, and that such surgery would not reduce the breast cancer risk by 100%. If they tested positive for a BRCA1/BRCA2 mutation at the age of 35, 67.7% of respondents predicted that they would have their ovaries removed as a prophylactic measure (Table 2). The rationale for such decision-making included a lack of confidence in ovarian cancer surveillance and treatment, that such surgery was not disfiguring, and this surgery is associated with a relatively easy recovery. Those who would not chose such surgery at the age of 35 stated that they would be reluctant to pursue hormone replacement therapy because of possible increased risks of breast cancer (and because they feared the lowered quality-of-life issues that would result from a lack of hormones) and would postpone surgery until they were closer to menopause.
HNPCC
If they tested positive for an HNPCC mutation at the age of 35, 17.4% would elect prophylactic colectomy (Table 3). The main reasons cited for pursuing such surgery were to reduce colon cancer risk as much as possible and avoid routine colonoscopies. Those who would not pursue surgery stated their confidence in colonoscopy as a surveillance method, the desire to postpone such surgery until after a lesion or polyp was detected, lower quality of life, lower body image, and lack of evidence of associated survival benefit as reasons for not choosing prophylactic colectomy. Fifty-four percent of respondents predicted that they would have a prophylactic hysterectomy. The main reasons listed were reducing cancer risk as much as possible, the feeling that this organ is no longer needed, and that the surgery would not alter lifestyle or body image. Of those who would not pursue hysterectomy, the reasons cited were lack of evidence of survival benefit associated with the procedure, the desire to postpone surgery until after menopause, the HNPCC-associated cancer risk is not high enough to justify surgery, screening is adequate, and that endometrial cancer is quite treatable. If they tested positive for an HNPCC mutation, 52% of respondents predicted they would have their ovaries removed (Table 3). The leading reasons for this decision were that surveillance is inadequate, this surgery would not significantly alter lifestyle or body image, and this surgery would reduce ovarian cancer risk as much as possible. Those who would not pursue such surgery at the age of 35 stated that they would postpone surgery until a later age and that the risk of ovarian cancer in HNPCC is not high enough to warrant prophylactic surgery.
Insurance Issues
One quarter of respondents would use an alias when testing, again to reduce the risk of discrimination and to maximize confidentiality (Table 4). Those who would not use an alias stated that they would want the information in their medical records, would use their insurance to pay for testing, would feel comfortable with measures taken to ensure confidentiality, and felt that using an alias was dishonest.
Sharing of Results and Support Fewer respondents would share results with friends (58.6%) and colleagues (30.4%) (Table 4). Those who would share the information with friends stated that they needed support from these contacts. Those who would not share their results with friends felt the need to protect their privacy and the privacy of their family members. The need for support was also the reason most cited for sharing information with colleagues. The need for privacy and the fear of job discrimination on the basis of the test result were the main reasons for not sharing genetic test information with colleagues. The majority of counselors (57.1%) would seek professional psychologic support to cope with the results of their testing (Table 5). The main reasons for seeking support were that it would be needed and that it is precautionary. Those who would not seek support cited confidence in their own coping mechanisms, fear of disclosure to insurance companies, and preference of discussing issues with family and/or friends as their reasons for decision-making.
Predisposition testing for cancer susceptibility genes is controversial and carries weighty potential risks and benefits.34-36 Widespread commercial testing for BRCA1, BRCA2, and the genes associated with HNPCC has preceded the availability of long-term prospective data indicating what interventions are most effective in individuals who carry mutations in such genes. In the interim, patients and their health care providers are left in the undesirable position of making crucial decisions regarding genetic testing and subsequent management without the benefit of long-term clinical data. Concerns about the psychologic and emotional impact of such testing and the potential risk of genetic discrimination complicate the situation even further.44 This study sought to examine how those providers most familiar with this unique combination of risks and benefits would proceed if they themselves were found to be at risk of carrying a BRCA1/BRCA2 or HNPCC mutation. The results of this study revealed that the vast majority of providers (85% and 91%) predicted that they would pursue genetic testing if they were found to be at a 50% risk of carrying a BRCA1/BRCA2 or HNPCC mutation, respectively. Although interest in genetic testing has been high among the general population and individuals who have one first-degree relative with cancer, the actual uptake of testing has been significantly lower in patients from hereditary cancer families who have an in-depth understanding of the pertinent information.29,30,38,45,46 Previous studies have indicated that when patients learn the risks, benefits, and limitations of testing, they are less interested in moving forward with it.47 The predicted utilization in this study may also be somewhat greater than actual uptake of testing would be; however, the study subjects making the predictions are well educated in the area of genetic testing and its associated risks and benefits. This knowledge, combined with their clinical experience, may make it possible for them to predict more accurately what they would do if they were found to be at risk for such a mutation. Few studies have examined what mutation carriers predicted they would do, and what actions they would truly carry out, regarding medical management. Lerman et al29 found that among unaffected, female BRCA1 carriers, 17% intended to have bilateral prophylactic mastectomies and 33%, prophylactic oophorectomies. Although Lynch et al30 reported that a considerable percentage of BRCA1 mutation carriers were considering prophylactic mastectomy (35%) and oophorectomy (76%) as options, the study did not examine what procedures these patients actually planned to pursue. The data presented here reveal that a significant percentage of providers believe they would opt for prophylactic mastectomies (24.5%) and oophorectomy (67.7%). These numbers are higher than the aforementioned patient predictions reported by Lerman et al.29 Previous studies have demonstrated that providers are more in favor of prophylactic mastectomy for their patients who carry BRCA1/BRCA2 mutations than are their patients.48,49 Female providers may also favor prophylactic surgery as a personal preference more than other women. Stefanek50 reported that 50% and 86% of female radiation and medical oncologists, respectively, predicted they would personally pursue prophylactic bilateral mastectomies if faced with a 30-year invasive breast cancer risk of 35% to 40%. The preferences for aggressive risk-reduction options of the providers in the current study may reflect, in part, their exposure to very high-risk families, early-onset cancers and cancer treatment, morbidity, and mortality encountered in the average cancer genetic counseling practice. It is known that professional exposures may impact attitudes and personal health behaviors among health care providers.51 These preferences may also be due to the fact that the counselors surveyed here may be more familiar with, and less fearful of, prophylactic surgeries than would the average patient. The small number of male respondents (n = 11) in this study made it impossible to determine whether the sex of the counselor had a statistically significant impact on response. However, it is interesting than none of the men surveyed would recommend prophylactic bilateral mastectomy to a close female relative in this scenario, whereas one quarter of the women respondents would choose this option for themselves. Men were, however, more likely to choose prophylactic oophorectomy and hysterectomy than were female respondents. Although we are unable to draw conclusions from these small numbers, it is possible that men (even male providers) value the cosmetic importance of breasts more than women do or that women fear breast cancer more than do their male counterparts. These data highlight an interesting area for further study. The data suggest that counselors whose primary focus is cancer would be slightly less likely to bill their medical insurance for genetic testing than would other respondents. Counselors who did not specialize in cancer were more likely to seek psychologic support during the genetic counseling process. Again, these observations reflect apparent trends and are not statistically significant. The fact that less than one quarter of providers surveyed in this study would submit the charges for genetic testing to their insurance companies underscores the magnitude of concern surrounding genetic discrimination. The fear of genetic discrimination—either for themselves, their children, or in terms of future insurability—is prevalent among providers.52 However, Geller et al48 found that 34% of providers underestimated the importance of discussing the risk of insurance discrimination with a patient making a decision about testing. Sensitivity to these issues may make it possible for counselors to provide more support to concerned patients and to make better suggestions about methods by which to minimize risks. It is interesting that although preliminary data have not revealed adverse psychologic outcomes associated with genetic testing,29,44 the majority of counselors in this study would still seek professional psychologic support to cope with the results of testing. Although most patients do not seem to suffer serious psychologic harm from testing, respondents acknowledged that the process is very stressful and that they would opt for psychologic counseling to ease them through the process and to assist them in dealing with the long-term implications of testing. Could providers’ personal attitudes about genetic testing and prophylactic surgery influence the process of genetic counseling? One of the fundamental tenets of genetic counseling is that of nondirectiveness, in which counselors "strive to enable their clients to make informed, independent decisions free of coercion."53 Although complete neutrality is not always achieved,54,55 genetic counselors have specialized training in recognizing their own feelings and minimizing the influence of these personal feelings on the counseling session. Additionally, although the provider’s advice may influence patient decision-making somewhat, studies in other areas of counseling have shown that patient, not provider, preferences were the principal determinants of decision-making.56 It is probable that although counselors provide patients with their options for testing, surveillance, and risk reduction, patients make choices on the basis of their own preferences. A balance between affording patients autonomy and providing them with some direction on the basis of their needs and values is one of the goals of effective genetic counseling. This study has several limitations. The first is that the sample size (296) of the NSGC-SIG at the time of this study was relatively small. The field of cancer genetic counseling is still in its infancy, and this small number reflects this fact. The response rate of 55% is within the normal range of response for a professional group.57 However, the response rate would likely have been higher if nonresponders had been recontacted or if a financial incentive had been offered. Because of the small size of this professional group, it is also possible that some members did not respond because they felt they could be identified by the demographics of this study. If respondents felt they could be identified, they may have been reluctant to disclose their feelings about the controversial areas of genetic testing, prophylactic surgery, and genetic discrimination. These numbers were not large enough to support statistical correlations between demographics and decision-making. This study is the first to examine what providers immersed in the complex field of cancer genetic counseling predict they would do in terms of genetic testing, medical management, and support, as well as how they would approach payment for testing. A significant percentage of counselors predicted they would opt for prophylactic surgeries to reduce their cancer risks. The majority of counselors would couple genetic testing with professional psychologic support. More than three quarters of providers would reduce their risk of genetic discrimination by self-paying for testing. In summary, despite the potential and significant risks that accompany genetic testing, the vast majority of providers believe they would still pursue testing.
Supported in part by a Special Projects Fund grant from the National Society of Genetic Counselors (E.M., principal investigator). This study was performed at the Yale Cancer Center, Yale School of Medicine. We thank Jill Brensinger, MS, for serving as a project consultant, and Daniel Zelterman, PhD, Nancie Petrucelli, MS, and Pete Ferris for their assistance with this study.
1. American Society of Clinical Oncology: Statement of the American Society of Clinical Oncology: Genetic testing for cancer susceptibility. J Clin Oncol 14:1730-1736, 1996 2. Easton DF, Ford D, Bishop T, et al: Breast and ovarian cancer incidence in BRCA1-mutation carriers. Am J Hum Genet 56:265-271, 1995[Medline] 3. Easton DF, Steele L, Fields P, et al: Cancer risks in two large breast cancer families linked to BRCA2 on chromosome 13q12-13. Am J Hum Genet 61:120-128, 1997[Medline] 4. Ford D, Easton DF, Bishop DT, et al: Risks of cancer in BRCA1-mutation carriers. Lancet 343:692-695, 1994[Medline] 5. Friedman LS, Gayther SA, Kurosaki T, et al: Mutation analysis of BRCA1 and BRCA2 in a male breast cancer population. Am J Hum Genet 60:313-319, 1997[Medline] 6. Serova OM, Mazoyer S, Puget N, et al: Mutations in BRCA1 and BRCA2 in breast cancer families: Are there more breast cancer-susceptibility genes? Am J Hum Genet 60:486-495, 1997[Medline] 7. Struewing JP, Brody LC, Erdos MR, et al: Detection of eight BRCA1 mutations in 10 breast/ovarian cancer families, including 1 family with male breast cancer. Am J Hum Genet 57:1-7, 1995[Medline]
8.
Struewing JP, Hartge P, Wacholder S, et al: The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. N Engl J Med 336:1401-1408, 1997 9. Phelan CM, Lancaster JM, Tonin P, et al: Mutation analysis of the BRCA2 gene in 49 site-specific breast cancer families. Nat Genet 13:120-122, 1996[Medline] 10. Wooster R, Bignell G, Lancaster J, et al: Identification of the breast cancer susceptibility gene BRCA2. Nature 378:789-792, 1995[Medline]
11.
Marra G, Boland CR: Hereditary nonpolyposis colorectal cancer. J Natl Cancer Inst 87:1114-1125, 1995 12. Aarnio M, Mecklin J-P, Aaltonen LA, et al: Lifetime risk of different cancers in hereditary non-polyposis colorectal cancer (HNPCC) syndrome. Int J Cancer 64:430-433, 1995[Medline] 13. Burke W, Daly M, Garber J, et al: Recommendations for follow-up care of individuals with an inherited predisposition to cancer: II. BRCA1 and BRCA2. JAMA 277:997-1003, 1997[Abstract]
14.
Fisher B, Costantino JP, Wickerman DL, et al: Tamoxifen for the prevention of breast cancer: Report of the National Surgical Adjuvant Breast and Bowel Project P-1 study. J Natl Cancer Inst 90:1371-1388, 1998
15.
Hartmann LC, Schaid DJ, Woods JE, et al: Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. N Engl J Med 340:77-84, 1999
16.
Narod SA, Risch H, Moslehi R, et al: Oral contraceptives and the risk of hereditary ovarian cancer. N Engl J Med 339:424-428, 1998 17. American College of Obstetrics and Gynecology: Committee opinion: Breast-ovarian cancer screening. Am J Obstet Gynecol 176:1-2, 1996 18. NIH Consensus Development Panel on Ovarian Cancer: Ovarian cancer: Screening, treatment, and follow-up. JAMA 273:491-497, 1995[Abstract] 19. Piver MS, Jishi MF, Tsukada Y, et al: Primary peritoneal carcinoma after prophylactic oophorectomy in women with a family history of ovarian cancer. Cancer 71:2751-2755, 1993[Medline] 20. Struewing JP, Watson P, Easton DF, et al: Prophylactic oophorectomy in inherited breast/ovarian cancer families. J Natl Cancer Inst Monogr 17:33-35, 1995 21. Burke W, Petersen G, Lynch P, et al: Recommendations for follow-up care of individuals with an inherited predisposition to cancer: Hereditary nonpolyposis colon cancer. JAMA 277:915-919, 1997[Abstract] 22. DeCosse JJ: Surgical prophylaxis of familial colon cancer: Prevention of death from familial colorectal cancer. J Natl Cancer Inst Monogr 17:31-32, 1995
23.
Syngal S, Weeks JC, Schrag D, et al: Benefits of colonoscopic surveillance and prophylactic colectomy in patients with hereditary nonpolyposis colorectal cancer mutations. Ann Intern Med 129:787-796, 1998
24.
Silverberg SG, Makowski EL: Endometrial carcinoma in young women taking oral contraceptive agents. Obstet Gynecol 46:503-506, 1975
25.
Lapham EV, Kozma C, Weiss JO: Genetic discrimination: Perspectives of consumers. Science 274:621-624, 1996 26. Billings PR, Kohn MA, de Cuevas M, et al: Discrimination as a consequence of genetic testing. Am J Hum Genet 50:476-482, 1992[Medline] 27. Bluman LG, Rimer BK, Berry DA, et al: Attitudes, knowledge, and risk perceptions of women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2. J Natl Cancer Inst 17:1040-1046, 1999 28. Lerman C, Marshall J, Audrain J, et al: Genetic testing for colon cancer susceptibility: Anticipated reactions of patients and challenges to providers. Int J Cancer 69:58-61, 1996[Medline] 29. Lerman C, Narod S, Schulman K, et al: BRCA1 testing in families with hereditary breast-ovarian cancer: A prospective study of patient decision making and outcomes. JAMA 275:1885-1892, 1996[Abstract] 30. Lynch HT, Lemon SJ, Durham C, et al: A descriptive study of BRCA1 testing and reactions to disclosure of test results. Cancer 79:2219-2228, 1997[Medline] 31. Lynch HT, Watson P, Tinley S, et al: An update on DNA-based BRCA1/BRCA2 genetic counseling in hereditary breast cancer. Cancer Genet Cytogenet 109:91-98, 1999[Medline] 32. Wingrove KJ, Norris J, Barton PL, et al: Experiences and attitudes concerning genetic testing and insurance in a Colorado population: A survey of families diagnosed with fragile X syndrome. Am J Med Genet 64:378-381, 1996[Medline] 33. Smetanka SL: The asymptomatic ill and genetic discrimination: Part II. Health Care Law Mon Sep:3-10, 1998 34. Devilee P: BRCA1 and BRCA2 testing: Weighing the demand against the benefits. Am J Hum Genet 64:943-948, 1999[Medline]
35.
Kodish E, Wiesner GL, Mehlman M, et al: Genetic testing for cancer risk: How to reconcile the conflicts. JAMA 279:179-181, 1998 36. Weitzel JN: The current social, political, and medical role of genetic testing in familial breast and ovarian carcinomas. Curr Opin Obstet Gynecol 11:65-70, 1999[Medline] 37. Benkendorf JL, Reutenauer JE, Hughes CA, et al: Patients’ attitudes about autonomy and confidentiality in genetic testing for breast-ovarian cancer susceptibility. Am J Med Genet 73:296-303, 1997[Medline] 38. Croyle RT, Lerman C: Interest in genetic testing for colon cancer susceptibility: Cognitive and emotional correlates. Prev Med 22:284-292, 1993[Medline] 39. Durfy SJ, Bowen DJ, McTiernan A, et al: Attitudes and interest in genetic testing for breast and ovarian cancer susceptibility in diverse groups of women in western Washington. Cancer Epidemiol Biomarkers Prev 8:369-375, 1999 40. Geller G, Doksum T, Bernhardt BA, et al: Participation in breast cancer susceptibility testing protocols: Influence of recruitment source, altruism, and family involvement on women’s decisions. Cancer Epidemiol Biomarkers Prev 8:377-383, 1999 41. Glanz K, Grove J, Lerman C, et al: Correlates of intentions to obtain genetic counseling and colorectal cancer gene testing among at-risk relatives from three ethnic groups. Cancer Epidemiol Biomarkers Prev 8:329-336, 1999
42.
Smith KR, Croyle RT: Attitudes toward genetic testing for colon cancer risk. Am J Public Health 85:1435-1438, 1995 43. Tambor ES, Rimer BK, Strigo TS: Genetic testing for breast cancer susceptibility: Awareness and interest among women in the general population. Am J Med Genet 68:43-49, 1997[Medline] 44. Lerman C, Hughes C, Lemon SJ, et al: What you don’t know can hurt you: Adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing. J Clin Oncol 16:1650-1654, 1998[Abstract] 45. Lerman C, Daly M, Masny A, et al: Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Clin Oncol 12:843-850, 1994[Abstract]
46.
Lerman C, Hughes C, Trock BJ: Genetic testing in families with hereditary nonpolyposis colon cancer. JAMA 281:1618-1622, 1999 47. Holtzman NA, Bernhardt BA, Doksum T, et al: Education about BRCA1 testing decreases women’s interest in being tested. Am J Hum Genet 59:A56, 1996 (abstr 291) 48. Geller G, Bernhardt BA, Doksum T, et al: Decision-making about breast cancer susceptibility testing: How similar are the attitudes of physicians, nurse practitioners, and at-risk women? J Clin Oncol 16:2868-2876, 1998[Abstract] 49. O’Malley MS, Klabunde CN, McKinley ED, et al: Should we test women for inherited susceptibility to breast cancer? N C Med J 58:176-180, 1997[Medline] 50. Stefanek ME: Bilateral prophylactic mastectomy: Issues and concerns. J Natl Cancer Inst Monogr 17:37-42, 1995 51. Blacconiere MJ, Oleckno WA: Health-promoting behaviors in public health: Testing the health promotion model. J R Soc Health 119:11-16, 1999[Medline] 52. Rowley PT, Loader S: Attitudes of obstetrician-gynecologists toward DNA testing for a genetic susceptibility to breast cancer. Obstet Gynecol 88:611-615, 1996[Abstract] 53. National Society of Genetic Counselors: Code of ethics. J Genet Couns 1:41-43, 1991 54. Bartels DM, LeRoy BS, McCarthy P, et al: Nondirectiveness in genetic counseling: A survey of practitioners. Am J Med Genet 72:172-179, 1997[Medline] 55. van Zuuren FJ: The standard of neutrality during genetic counselling: An empirical investigation. Patient Educ Couns 32:69-79, 1997[Medline]
56.
Heckerling PS, Verp MS, Albert N: Patient or physician preferences for decision analysis: The prenatal genetic testing decision. Med Decis Making 19:66-77, 1999 57. Maguire BT: Response to mail questionnaires by health professionals. J Econ Soc Meas 17:87-99, 1991 Submitted November 16, 1999; accepted February 22, 2000. This article has been cited by other articles:
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Copyright © 2000 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
