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Genetic testing for colorectal carcinoma susceptibility
Focus group responses of individuals with colorectal carcinoma and first-degree relatives
Article first published online: 4 JAN 2001
Copyright © 2001 American Cancer Society
Volume 91, Issue 1, pages 57–65, 1 January 2001
How to Cite
Kinney, A. Y., DeVellis, B. M., Skrzynia, C. and Millikan, R. (2001), Genetic testing for colorectal carcinoma susceptibility. Cancer, 91: 57–65. doi: 10.1002/1097-0142(20010101)91:1<57::AID-CNCR8>3.0.CO;2-U
- Issue published online: 4 JAN 2001
- Article first published online: 4 JAN 2001
- Manuscript Revised: 22 SEP 2000
- Manuscript Accepted: 22 SEP 2000
- Manuscript Received: 11 APR 2000
- Lineberger Comprehensive Cancer Center
- University of North Carolina at Chapel Hill
- National Cancer Institute. Grant Number: CA-57726
- colorectal carcinoma;
- focus group discussion;
- genetic counseling;
- genetic testing;
Colorectal carcinoma (CRC) may be the most frequent form of hereditary cancer. Genetic counseling and testing for heritable CRC is a promising approach for reducing the high incidence and mortality rates associated with the disease. Patients with CRC or those with at least one family member with the disease are the most likely persons to request or be offered genetic testing in the clinical or research setting. Currently, however, little is known about the behavioral, psychosocial, ethical, legal, and economic outcomes of CRC genetic counseling and testing.
Eight focus group interviews, four for CRC patients (n = 28) and four for first-degree relatives (n = 33), were conducted to obtain insights into attitudes, beliefs, and informational needs about genetic testing for hereditary CRC.
Focus group interviews revealed a general lack of knowledge about cancer genetics and genetic testing; worry about confidentiality issues; strong concern for family members, particularly children; and a need for primary care providers to be informed about these issues. Major perceived advantages of genetic testing included improving health-related decisions, guiding physicians in making recommendations for surveillance, and informing relatives about risk potential. Disadvantages included potential discrimination, adverse psychologic effects, and financial costs associated with testing.
As knowledge and media coverage of genetics continue to expand, it becomes increasingly important to continue efforts on behalf of, and in partnership with, those individuals most affected by genetic testing for hereditary cancer syndromes. These findings provide data needed to develop and implement informational, educational, counseling, and research-oriented programs that are sensitive to individuals' concerns and preferences. Cancer 2001;91:57–65. © 2001 American Cancer Society.
Approximately 130,200 persons receive a diagnosis of colorectal carcinoma (CRC) annually, and approximately 56,300 will die from the disease.1 Approximately, 20% of CRCs are believed to result from inherited susceptibility.2 Available data suggest that first-degree relatives (FDRs) of CRC patients have a two- to fourfold increased risk of CRC, and having two or more relatives with CRC increases risk three-to sixfold over the general population.3–5
Genetic testing is currently available for two rare syndromes: familial adenomatous polyposis (FAP) and hereditary nonpolyposis colon carcinoma.2, 6, 7 The altered genes are inherited in an autosomal dominant pattern; offspring have a 50% risk of inheriting a gene mutation. Individuals with FAP virtually have a 100% lifetime risk of developing CRC. Hereditary nonpolyposis colon carcinoma mutation carriers have an estimated 70–80% lifetime CRC risk.2, 8–10 It is anticipated that genes for the more common types of familial CRC, along with shared environmental factors, eventually will be identified.
Genetic counseling and testing for CRC offer the potential for early detection and removal of polyps, premalignant precursors of many colon carcinomas. It is projected that genetic testing soon will be available for a large segment of the population, including and especially CRC patients and their FDRs. Because screening rates remain low even among high risk individuals, it is important to explore behavioral, psychosocial, ethical, legal, and economic factors of this type of testing.
Data suggest that interest in genetic testing is high among both high and average risk persons.11–15 To our knowledge, no other published studies have utilized focus group discussions to evaluate 1) beliefs, knowledge, and attitudes toward genetic testing; 2) informational and counseling needs (among persons with CRC and their FDRs); and 3) factors influencing decision making about participation in testing.
PATIENTS AND METHODS
Participants were eligible if they were 18 years or older, had either CRC or at least 1 FDR with the disease, had access to transportation and lived within approximately 60 miles of our cancer center, and were mentally and physically able to participate in a focus group lasting 2 hours. One hundred three eligible individuals (43 CRC patients and 60 FDRs) were invited to attend a focus group discussion. Twenty-eight CRC patients and 33 FDRs attended 1 of 8 focus groups. Most of the CRC participants (89%) were identified by patient lists at the University of North Carolina Lineberger Comprehensive Cancer Center; others were members of local CRC or ostomy support groups (4%) or were recruited through the media (7%). We recruited most of the FDRs (69%) from the local community through the media (i.e., newspapers, fliers, and radio); others were recruited via their family members with CRC (28%) or via physician referral (3%).
Procedures and Setting
The University of North Carolina (UNC) at Chapel Hill School of Medicine's institutional review board approved the study. Informed consent was obtained for all participants. Eight focus groups, 4 with CRC patients and 4 with FDRs, were conducted at UNC over a 1-week period during weekday evenings. Each focus group had 5–10 participants and was scheduled so that the related participants were not in the same group. The focus group discussions were moderated by a professional focus group leader; other members of the research team took notes and tape-recorded and transcribed the sessions. Light refreshments, a $25 honorarium, and parking fee reimbursement were provided. Initially, the moderator provided a description of the purpose of the study, measures used to ensure confidentiality, roles of the moderator and assistant moderator, and guidelines for effective participation.
Data on sociodemographics, family history of cancer, risk perceptions, and medical decision-making preferences were collected by telephone. Participants were asked to rate their chances of having an altered CRC gene from 0–100%. Response choices concerning medical decision making were: “I leave all decisions to my doctor;” “My doctor makes the final decision, but considers my opinion;” “I share responsibility with my doctor;” “I make my own decision after seriously considering my doctor's opinion;” or “I make all medical decisions regardless of my doctor's opinion.” A one-page written statement about genetic testing was distributed and read aloud by the moderator shortly after the focus group commenced; subsequently, an open-ended interview script guided the audiotaped discussion. The interview was designed to become more specific as each discussion progressed, and follow-up questions explored or further expanded on areas under discussion. At both the beginning and end of the session, each participant completed a one-item questionnaire asking if he or she would take a genetic test for hereditary CRC if such a test were available, with response choices of yes, no, or unsure.
All audiotaped sessions were transcribed verbatim. NUD·IST-QSR (Qualitative Solutions and Research, Pty., Ltd., 1997, Melbourne, Victoria, Australia) was used to organize and analyze the data. To ensure that the data analysis was systematic and verifiable, an investigator (A.Y.K.) and the moderator held debriefing meetings after each focus group to document common themes and opinions. The transcripts first were sorted by question and then analyzed by two of the investigators (B.M.D. and A.Y.K.) for trends and themes that emerged as a result of each key question asked.18 When possible, responses were compared according to disease status (i.e., CRC patients to FDRs), gender, age, and race. Descriptive statistics were calculated, and response distributions were used to represent individual responses to questionnaire items. Standard chi-square and Fisher exact tests were used to determine if disease status, age (younger than 50 years vs. 50 years or older), race (black vs. nonblack), or gender influenced differences in testing. The level of significance was 0.05, and the P values were two-sided.
Selected characteristics of the participants are presented in Table 1. The average age of participants in the patient groups was 66 years (standard deviation [SD], 12.8; range, 39–83) whereas the average age of the participants in the FDR groups was 44 years (SD, 15.2; range, 22–72).
|Variable||No. of colorectal carcinoma patients (n = 28) (%)||No. of first-degree relatives (n = 33) (%)|
|Mean age (yrs) (SD)||66 (12.8)||44 (15.3)|
|Female||14 (50)||23 (70)|
|Male||14 (50)||10 (30)|
|African American||6 (21)||3 (9)|
|Asian||0 (0)||1 (3)|
|White||22 (79)||29 (88)|
|Married||20 (71)||16 (49)|
|Not married||8 (29)||17 (51)|
|High school or lower||16 (57)||8 (24)|
|College graduate||12 (43)||25 (76)|
|No. of FDRs with CRC|
|0||20 (71)||0 (0)|
|1||5 (18)||27 (81)|
|≥2||3 (11)||6 (19)|
|Perceived risk of being a gene carrier|
|< 50%||9 (32)||8 (24)|
|≥ 50%||12 (43)||24 (73)|
|Don't know||7 (25)||1 (3)|
|Medical decision-making preferences|
|Leave all decisions to physician||8 (29)||1 (3)|
|Physician makes the final decision, but considers patient's opinion||7 (25)||3 (9)|
|Both patient and provider share responsibility for decision making||10 (36)||16 (49)|
|Patient makes decision after carefully considering physician's opinion||3 (10)||13 (39)|
|Does not consider physician's opinion||0 (0)||0 (0)|
Knowledge, Advantages, and Disadvantages of Genetic Testing
Most participants in both the patient and FDR groups said that they had heard little to nothing about genetic testing for CRC susceptibility, although several indicated that they had heard about genetic testing for breast carcinoma. Although there were no apparent gender or racial knowledge differences, we did not attempt quantification. The participants who indicated that they heard about genetic testing for CRC learned of it via the media rather than from a health care provider. Some seemed to have difficulty understanding the concept of genetic screening for cancer and confused it with tumor marker testing (i.e., carcinoembryonic antigen levels).
As shown in Table 2, pre- and postfocus group testing intentions significantly differed in FDRs (82% vs. 42%; P < 0.01) but not in CRC patients (96% vs. 89%; P = 0.61). The variables age, race, and gender were not significantly related to testing intentions.
|Interest in genetic testing||Before focus group (%)||After focus group (%)||χ2||P value|
|Yes||54 (89)||38 (62)||11.7||< 0.01|
|No/not sure||7 (11)||23 (38)|
|Colorectal carcinoma patients|
|Yes||27 (96)||25 (89)||1.1||0.61|
|No/not sure||1 (4)||3 (11)|
|Yes||27 (82)||14 (42)||10.9||< 0.01|
|No/not sure||6 (18)||19 (58)|
Advantages and disadvantages of testing were identified and discussed during the focus group discussions. Advantages offered by participants included the following: test results can guide physicians in making screening recommendations; motivate carriers to get more enhanced screening; offer peace of mind; help family members; predict risk of second malignancies; inform need for primary prevention (e.g., diet and exercise); cause reduction of uncertainty about risk; indicate need for seeing a specialist; provide knowledge; provide sense of relief if found not to carry a gene mutation; provide feeling of increased control over health; and provide improved health-related decision making. Disadvantages offered by participants included potential breech of confidentiality; potential loss of health and life insurance; potential interference with social relations (stigmatized); out-of-pocket expenses; incorrect results (e.g., false-positives and false-negatives); false sense of security; employability concerns; psychologic consequences; lack of known preventive measures; child bearing decisions may result in an abortion; guilt; and inaccuracy of risk predictions. After the focus group discussions, participants were asked to indicate the most important advantage and disadvantage of genetic testing. (Table 3). For CRC patients, the most frequently cited advantage was to help family members make better health-related decisions (46%). For FDRs, the most frequently cited advantage was to assist in decisions about detection and preventive measures (36%). Regarding disadvantages, CRC patients feared genetic discrimination (36%). As one participant stated, “I feel that if they're gonna do the testing for it … it would have to be kept confidential. It cannot be allowed to be released.” Among the FDRs, the most important disadvantage was inaccuracy of the test (24%).
|Perception of genetic testing||Colorectal cancer patients (n = 28) (%)||First-degree relatives (n = 33) (%)|
|Inform children of increased risk||13 (46)||8 (24)|
|To guide decisions regarding preventive health behaviors||4 (14)||12 (36)|
|To predict risk of primary colorectal carcinoma or recurrence risk||3 (11)||7 (21)|
|To know||2 (7)||0 (0)|
|Peace of mind||1 (4)||0 (0)|
|Altruism||0 (0)||2 (6)|
|No advantage cited||5 (18)||4 (12)|
|Genetic discrimination||10 (36)||12 (36)|
|Potential psychologic distress||4 (14)||4 (12)|
|Inaccuracy of test||0 (0)||8 (24)|
|Limited information value||0 (0)||6 (18)|
|Out-of-pocket expenses||0 (0)||5 (15)|
|No other family member affected||1 (4)||0 (0)|
|No disadvantage cited||13 (46)||0 (0)|
There was much concern among FDRs about the need for more frequent colonoscopies for mutation carriers, particularly because of the discomfort associated with the preparation and the procedure itself. Participants perceived the following barriers to accessing genetic testing services: lack of regular medical care and/or insurance coverage, low socioeconomic status (SES), and lack of knowledge about testing availability. Most participants were alarmed to learn the cost of the test (as much as $2500); they indicated that they would not pay more than $100.
Many participants believed that knowledge of being a gene carrier would help or have helped them make better health-related decisions, specifically about more vigilant CRC screening and other risk reduction behaviors. Some CRC patients believed that knowledge of carrier status would tell them if they were at risk for a genetically linked second malignancy or recurrent CRC. Others, particularly the FDRs, believed that knowledge of their carrier status would not provide new information. For example, some FDRs believed that they were at increased risk based on their personal or family history of cancer and that taking a genetic test would only confirm their suspicion. In addition, some participants noted that knowledge of their carrier status would not lead them to change behavior because they already were engaged in risk reduction behaviors (i.e., diets low in fat, high in fiber and fruits and vegetables; antioxidant use; exercise; and frequent CRC screening). For many of the FDRs, a negative test would provide a sense of relief and reduce the frequency of burdensome checkups and colonoscopies, whereas others seemed to be more concerned about the effects of a negative test than about a positive test. Specifically, they feared that a negative test result would give them and/or their family members a false sense of security that would decrease motivation for screening and healthy behaviors.
Some of the young FDRs noted that knowledge of carrier status would be a life altering experience and would influence decisions regarding marriage and childbearing. As one participant said, “From the point of a view of a young woman like this, if you're saying that it's an inherited gene and you find that she has it, then she might think not to have children …. She might change her whole life.”
Numerous patients and FDRs in all eight groups expressed concern or distress about the uncertainty of genetic test results. Risk often was perceived as a dichotomy: one either gets or does not get CRC. As described by one participant: “I couldn't be convinced that having the gene would mean I would definitely get it. And I couldn't be convinced that not having it would mean I absolutely won't get it. Right now I'm fairly certain because my father had colon cancer and … his doctor told me, you're a prime target now.”
For some of the FDRs, knowing one's carrier status would reduce the stress of worrying whether or not they were at high or extreme risk of CRC and give them peace of mind. Other participants believed that knowledge of being a gene carrier would cause them anxiety, depression, or a feeling of doom that could even cause CRC, and that that frequent intrusive thoughts would interfere with many aspects of their lives. As one participant stated, “Taking this test and getting back a positive result would make me feel so hopeless and that for the rest of my life I have nothing to look forward to. And me being 22 years old, I mean I've got so much life left in me. … I think you might be inclined to obsess about it a little bit too much if you have a positive result. …” Several of the participants noted that if they learned they were not carriers, they would probably feel immediate relief. However, this relief would be short-lived because they would worry that they were actually positive but tested negative (i.e., false-negative).
Concern about Family
Most CRC patients and FDRs experienced an overriding concern about their family, particularly their children's risk for CRC and that they intended to provide information and offer emotional support. Many participants believed that their own results would help their family members decide whether to have a genetic test, engage in regular CRC screening, and practice healthy behaviors, although some were concerned that they might become overzealous or even extremist about both their own and their children's life-styles. One participant said, “I think we all need to become more vigilant with our bodies … the advantage would be to alert your children and have them be more vigilant.” A few participants noted guilt about passing the gene to their children: “… if it was a false-positive and here you're led to believe that you're carrying that genetic gene, and … I've got to sit back and kind of wait for this day, if it's gonna happen, I mean you could drive yourself insane knowing … there's that possibility and, it may not ever come but then again, you don't know, it might … you got little children that you're wondering every day, look at them, did I give it to them?”
Some participants were concerned about the stress of communicating positive test results to family, and about not knowing how to answer pointed questions about the implications of a positive test. They feared that family members would get worried, and angry at them, upon hearing about a hereditary cancer gene mutation. A few participants stated that they would not convey positive results to family members described as highly anxious, fatalistic, or histrionic.
Mistrust and Genetic Discrimination
Fears of employment discrimination and breach of confidentiality and mistrust of society in protecting an individual's rights to privacy were predominant themes, more so among FDRs than among CRC patients. The following response indicates these concerns: “What she said with AIDS how they kind of flip flop, you know, everything is supposed to be kept all confidential and then all of a sudden, oh, we need names submitted. Could they do the same thing, if you were kept in some kind of file, all of a sudden have some kind of court ruling that this information would have to be released?”
Numerous participants expressed distrust of insurance companies and fear about losing health insurance or having premiums increased. One participant commented, “I've never had the cancer but I sure am killed with insurance because of other problems. I could just imagine what they would do if they saw a mutated gene. They'd say you can't be insured.” Suspicion about physicians and the medical establishment also was expressed. In response to the question about preferred sources of valid information, advice, and help with decision making, one participant stated, “It would be nice to get into contact with somebody that was doing some current research. Instead of just going and trusting any physician, you know what I mean?”
Informational Needs and Preferences
Many participants wanted specific quantitative information such as figures associated with risk of inheritance of CRC gene mutations, probabilities of getting CRC among mutation carriers, CRC survival estimates and test accuracy data, as well as preventive measures and screening recommendations (Table 4). One stated, “I want numbers, yeah. I think numbers seem important because that's what we all keep going back to are these percentages … and it would clarify things a bit more.” Another noted, “… I would like to have the facts in black and white so I could say well, this is what it says, you know, and read it directly from a medical report. 'Cause I got a bunch of doubting Thomases in my family. So they'd want to know the details.”
|Procedure for genetic testing|
|Basics of genetics: sporadic vs. germ line mutations, mode of inheritance|
|Natural history of colorectal carcinoma|
|Quantitative information on population prevalence of hereditary colorectal carcinoma, stage specific survival probabilities, risk associated with enhanced surveillance and healthy behaviors, likelihood of cancer recurrence, probability of second malignancy, penetrance|
|Insurance coverage of genetic testing services|
|Likelihood of breach of confidentiality|
|Accuracy of genetic test|
|Where can testing be done?|
|Who does genetic counseling?|
|Type of provider to see about getting testing and getting test results|
|Definition of genetic counseling|
|Cost of genetic testing and counseling|
|Benefits of genetic testing|
|Limitations and risks of genetic testing|
|List of specialized clinics or health professionals and tertiary care centers|
|Discussion about and assistance with communicating test results to family members|
There were no apparent gender, racial, or patient versus FDR differences with regard to informational needs. In general, there was a misunderstanding of probabilities and types of mutations (i.e., inherited vs. sporadic). Several participants noted that presentation of risks in the form of probabilities was more informative than qualitative information (e.g., increased vs. decreased risks).
Most participants believed that web sites, medical journal articles, pamphlets, and videos could provide valuable adjuncts to oral communication and personalized letters with genetic test results and implications. However, they emphasized that contradictory information is both confusing and distressing. They acknowledged that they could, and did, receive information from a variety of sources, including informal interchanges with neighbors and friends, magazines and newspapers, and radio or television broadcasts. Some recognized that such sources may or may not be accurate, do not address the impact on the reader of the information presented, and do not allow for clarification and discussion as would a face-to-face interaction.
Attitudes about Provider's Role in Decision Making
Most of patients and FDRs believed in the importance of their primary health care providers in helping them decide whether or not to take the test and, if they were found to be gene carriers, where to seek advice about screening and preventive measures. However, as previously noted, numerous participants feared that many physicians are not knowledgeable about genetic testing. Thus, some of the participants would consult with more specialized health care professionals: gastroenterologists, surgical oncologists, medical oncologists, genetic counselors, or other specialists, particularly one that their primary care provider (PCP) recommended or endorsed. One participant said, “I'd talk to my doctor first, then a genetic counselor or someone that is better educated than my doctor. Even genetics experts are not necessarily knowledgeable about medical interventions or health like a family physician.” Another said, “Well I would talk to my gastroenterologist, because this guy is really good with statistics. I mean, ask him a question and he gives you all the statistics. So, I know that that's the kind of answer I'd get. And he would advise me whether I was likely to get some useful information out of this genetic test.”
Despite a general lack of knowledge about genetic testing for familial CRC, patients and FDRs clearly regard genetic issues, and the direct implications of these issues on their lives, as extremely important. They perceive a need for information and for optimal communication with their health care providers, particularly their primary care providers, to facilitate informed decision making about genetic testing. Although there have been numerous studies of factors influencing intentions and actual uptake of genetic testing for predisposition to adult onset cancers, few have used focus group methodology or qualitative research methods.19–22 Our findings validate the results of other studies focusing on genetic testing for breast and ovarian carcinoma. Results obtained from this study have implications for educational programs, clinical practice, health policy, and future research.
Although interest in genetic testing was high before the focus groups, inclination to be tested decreased significantly among FDRs but not CRC patients after the discussions. Perhaps the psychosocial impact of testing may be greater on the FDR(s) than on the relative(s) who already developed cancer, and concern about adverse consequences of testing that was heightened during the focus group discussions influenced some of the participants' intention to have a genetic test. Other studies also have shown that interest in genetic testing for colorectal carcinoma,23 as well as for hereditary breast and ovarian carcinomas,20, 24 tends to decline after receiving more detailed information.
The study participants raised psychosocial issues such as fear of loss of confidentiality and privacy, health insurance and employment discrimination, and adverse personal and familial psychologic reactions. This supports previous surveys on genetic testing issues for CRC and for familial breast/ovarian carcinoma.14, 24, 26, 27 Our data suggest that concerns about genetic discrimination may prompt individuals at increased risk to avoid genetic tests that could have potential health benefits. Therefore, implementing and enforcing policies regarding data access, privacy, and confidentiality of genetic information should be top priorities in the area of health policy. The finding of psychologic distress related to familial risk particularly underscores the need for provision of emotional support to CRC patients and their FDRs during educational counseling sessions both before and after genetic tests.
Participants indicated the need for guidelines, including written materials, regarding optimal strategies for communicating test results to relatives. The participants stressed the importance of their PCPs, who they believed could both facilitate informed decision making about genetic testing for cancer susceptibility and implement a regimen of preventive health behaviors. Prior studies have shown that physician recommendations, when heeded, may be powerful predictors of preventive health behaviors.28–30 Although our participants had varying degrees of trust in their PCP's ability to provide education and counseling in the area of cancer genetics, many indicated that they expect their PCP to be knowledgeable about cancer genetics and genetic testing, to accurately assess and communicate risk and to interpret genetic test results. The option of having a health care provider inform relatives of test results also was considered desirable. However, the contradiction between the desire to get information from the PCP and the acknowledgment that the PCP often is not qualified to give genetic information presents a real dilemma. Participants also suggested that PCPs direct them to an appropriate clinic or health professional for more specific information if they could not provide it
Another aspect of the desire to have the PCP's advice about genetic testing is the traditional role of physicians in recommending medical tests and interventions. This contrasts with the tenet of nondirective counseling taught in genetic counseling training programs. “Nondirective” is defined as the presentation of the possible advantages, disadvantages, and limitations of a given test or procedure without inclusion of personal preferences, biases, or convictions. Many of the participants in our study indicated that they would want their health care providers to make a recommendation about whether they should have a genetic test. This is consistent with the findings of other studies.15, 31, 32 In addition, access to specialists may remain or become more limited due to financial issues. As a result, PCPs and other nongenetics health professionals increasingly will be called on to answer patients' questions about cancer genetics and genetic testing. Our data support the need for increased training of physicians and nurses in genetics and genetic counseling.33, 34 Educated PCPs and other nongenetic specialists can have a greater role in counseling, helping patients deal with information about genetic tests, and helping them decide whether to be tested at all.32, 35–37
Focus groups are not intended to produce representative findings. Therefore, the generalizability of the study's results is limited. Participants were willing to attend a focus group and may reflect their attraction to participating in group experiences in general or out of a desire to assist research. Some of those screened for the study who did not participate would have been glad to do so had lack of transportation not been a factor. This underscores the importance of bringing research to the community rather than expecting potential subjects to handle the logistic aspects of study participation. The attitudes of our participants may not reflect those who are distrustful of research. Participant groups demonstrated marked differences in age and education; this further limits generalizability of findings.
With the increasing availability of genetic testing for hereditary cancers, it will be important for health care providers in a variety of settings to be able to educate patients and answer questions about genetic testing and cancer prevention, obtain informed consent, identify high risk individuals, and counsel their patients about their risk and cancer genetics, or at least know when and where to refer them for the services that they need or request. As indicated by our participants, genetic competency among health care providers is expected and of paramount importance. Continued development of various types of culturally relevant educational resources for patients and their families also is needed. Group education also may be effective; many of our participants appreciated the opportunity to share their knowledge and perceptions. Helping patients with practical strategies to facilitate communication of genetic information between family members is an important area that has received little attention. Investigation into the effectiveness of and patient satisfaction with educational and counseling interventions that focus on the individual as well as the family would be worthwhile.
The authors are grateful to the focus group discussants, to Dr. Robert Sandler for assisting with implementation of the study, to Susan Schulman for assisting with the review and preparation of the article, to Gracia Wright for moderating the focus groups, and to Yeon-Ah Choi and Erin Kobetz for data management. They also thank Drs. William Cance, Benjamin Calvo, and Stephen Bernard, and the other clinicians who supported recruitment to the study.
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