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• W2021303737 abstract "Background & Aims: Clinical genetic testing can help direct cancer screening for members of Lynch syndrome families; however, there is limited information about family communication of genetic test results. Methods: A total of 174 probands who had genetic testing for Lynch syndrome were enrolled through 4 US cancer genetics clinics. Subjects were asked whether they had disclosed their genetic test results to first-, second-, and third-degree relatives. Univariate and multivariate analyses were used to identify clinical and demographic factors associated with informing immediate and extended family of genetic test results. Results: One hundred seventy-one of 174 probands (98%; 95% confidence interval, 95%–100%) reported that they had disclosed their genetic test result to a first-degree relative. Communication of test results to other relatives occurred significantly less often, with only 109 of 162 (67%; 95% confidence interval, 59%–74%) subjects with second- or third-degree relatives sharing their results. Individuals with a pathogenic mutation were significantly more likely to inform distant relatives than were subjects with a negative or indeterminate test result (odds ratio, 2.49; 95% confidence interval, 1.14–5.40). Probands’ age, sex, and cancer status did not influence communication of genetic test results. Lack of closeness and concerns that relatives would worry or not understand the implications of test results were the primary reasons for not sharing genetic test results. Conclusions: Most individuals who undergo genetic testing for Lynch syndrome share their test results with first-degree family members; however, these results reach more distant relatives significantly less often. Interventions to improve communication of genetic test results to members of the extended family are necessary to provide optimal cancer prevention care to at-risk families. Background & Aims: Clinical genetic testing can help direct cancer screening for members of Lynch syndrome families; however, there is limited information about family communication of genetic test results. Methods: A total of 174 probands who had genetic testing for Lynch syndrome were enrolled through 4 US cancer genetics clinics. Subjects were asked whether they had disclosed their genetic test results to first-, second-, and third-degree relatives. Univariate and multivariate analyses were used to identify clinical and demographic factors associated with informing immediate and extended family of genetic test results. Results: One hundred seventy-one of 174 probands (98%; 95% confidence interval, 95%–100%) reported that they had disclosed their genetic test result to a first-degree relative. Communication of test results to other relatives occurred significantly less often, with only 109 of 162 (67%; 95% confidence interval, 59%–74%) subjects with second- or third-degree relatives sharing their results. Individuals with a pathogenic mutation were significantly more likely to inform distant relatives than were subjects with a negative or indeterminate test result (odds ratio, 2.49; 95% confidence interval, 1.14–5.40). Probands’ age, sex, and cancer status did not influence communication of genetic test results. Lack of closeness and concerns that relatives would worry or not understand the implications of test results were the primary reasons for not sharing genetic test results. Conclusions: Most individuals who undergo genetic testing for Lynch syndrome share their test results with first-degree family members; however, these results reach more distant relatives significantly less often. Interventions to improve communication of genetic test results to members of the extended family are necessary to provide optimal cancer prevention care to at-risk families. Genetic testing plays an increasing role in the care of patients at risk for cancer as a result of hereditary cancer syndromes. Lynch syndrome, also known as hereditary nonpolyposis colorectal cancer, is the most common hereditary colorectal cancer syndrome, and accounts for approximately 3% to 5% of all diagnosed colorectal cancer cases.1Lynch H.T. Watson P. Shaw T.G. et al.Clinical impact of molecular genetic diagnosis, genetic counseling, and management of hereditary cancer Part II: hereditary nonpolyposis colorectal carcinoma as a model.Cancer. 1999; 86: 2457-2463Crossref PubMed Google Scholar Genetic testing is clinically available for mutations in the DNA mismatch repair genes MLH1, MSH2, and MSH6, which are the most common causes of Lynch syndrome. Because of the increased risk for colorectal and extracolonic cancers, individuals at risk for Lynch syndrome require a colonoscopy every 1 to 2 years starting at age 20 to 25,2Giardiello F.M. Brensinger J.D. Petersen G.M. AGA technical review on hereditary colorectal cancer and genetic testing.Gastroenterology. 2001; 121: 198-213Abstract Full Text PDF PubMed Scopus (302) Google Scholar and women should have screening for endometrial and ovarian cancers or consider prophylactic hysterectomy.2Giardiello F.M. Brensinger J.D. Petersen G.M. AGA technical review on hereditary colorectal cancer and genetic testing.Gastroenterology. 2001; 121: 198-213Abstract Full Text PDF PubMed Scopus (302) Google Scholar Identification of a pathogenic mutation through genetic testing confirms the clinical diagnosis of Lynch syndrome and provides an opportunity to stratify cancer risk for other family members. Individuals who undergo genetic testing for Lynch syndrome appear to be more likely to adhere to recommended cancer screening guidelines.3Wagner A. van Kessel I. Kriege M.G. et al.Long term follow-up of HNPCC gene mutation carriers: compliance with screening and satisfaction with counseling and screening procedures.Fam Cancer. 2005; 4: 295-300Crossref PubMed Scopus (74) Google Scholar A recent survey of cancer centers in the United States indicated that the demand for genetic evaluation services for familial cancer syndromes has increased rapidly over the past decade.4Epplein M. Koon K.P. Ramsey S.D. et al.Genetic services for familial cancer patients: a follow-up survey of National Cancer Institute Cancer Centers.J Clin Oncol. 2005; 23: 4713-4718Crossref PubMed Scopus (29) Google Scholar Although genetic testing is expensive, economic analyses have supported the clinical utility of genetic testing for Lynch syndrome and have shown that cost effectiveness increases substantially when the benefits of testing are extended to probands’ family members.5Ramsey S.D. Clarke L. Etzioni R. et al.Cost-effectiveness of microsatellite instability screening as a method for detecting hereditary nonpolyposis colorectal cancer.Ann Intern Med. 2001; 135: 577-588Crossref PubMed Google Scholar Studies have suggested that most relatives of patients with colorectal cancer would be interested in genetic testing for cancer predisposition6Kinney A.Y. Choi Y.A. DeVellis B. et al.Interest in genetic testing among first-degree relatives of colorectal cancer patients.Am J Prev Med. 2000; 18: 249-252Abstract Full Text Full Text PDF PubMed Scopus (42) Google Scholar; however, there are limited data regarding how information about genetic testing actually is communicated in families undergoing molecular evaluation for Lynch syndrome. The objectives of our study were to examine how genetic testing information is communicated in families at risk for Lynch syndrome, and to identify factors associated with disclosure of genetic test results to close and distant family members. We conducted a cross-sectional questionnaire study among individuals with a personal or family history fulfilling clinical criteria for Lynch syndrome. Subjects were recruited through 4 cancer genetics clinics in the United States: Dana-Farber Cancer Institute (Boston, MA), Massachusetts General Hospital (Boston, MA), University of Michigan (Ann Arbor, MI), and University of California San Francisco (San Francisco, CA). Eligible subjects included individuals whose personal or family history fulfilled Bethesda Guidelines for Lynch syndrome.7Rodriguez-Bigas M.A. Boland C.R. Hamilton S.R. et al.A National Cancer Institute Workshop on Hereditary Nonpolyposis Colorectal Cancer Syndrome: meeting highlights and Bethesda guidelines.J Natl Cancer Inst. 1997; 89: 1758-1762Crossref PubMed Scopus (925) Google Scholar All participants were age 18 years or older, and were required to read and write English. Eligible individuals were identified through visits at 1 of 4 cancer genetics clinics or through referral by a family member. Potential subjects were invited to enroll in the study either at a clinical visit or by mail. Individuals approached by mail received an initial study packet with an introduction letter and questionnaire, as well as a decline to participate form. Individuals who did not return study materials after 2 follow-up telephone calls and 2 mailings were considered nonresponders. Subjects who had undergone genetic testing were enrolled at least 3 months after their genetic test result had been disclosed to them. Questionnaire data were scanned and entered into a computerized database. The study was approved by the institutional review board of each participating study site. A total of 466 eligible individuals were approached for enrollment. Of these, 270 (58%) completed the study questionnaire, 34 (7%) declined to participate, and 158 (34%) were nonresponders. Women and college graduates were more likely to complete the study questionnaires. There were no significant differences between other demographic characteristics (such as age and cancer status) of study responders and nonresponders. Of the 270 subjects who completed study questionnaires, 174 (64%) reported that they had undergone genetic testing for Lynch syndrome; only these individuals were included in this analysis. The study questionnaires collected standard demographic data including age, sex, race, ethnicity, marital status, household income, level of education, and type of health insurance. Subjects provided details about personal cancer history and were asked to estimate their own risk for developing cancer and whether they had ever undergone genetic testing for Lynch syndrome. In a detailed family history section, subjects provided information about number of siblings; children; prevalence of cancers among first-, second-, and third-degree relatives; as well as history of genetic testing and specific genetic test results for individuals in their immediate and extended family who had undergone genetic testing. A family pedigree was constructed for each subject. Subjects were asked, “Have you shared your genetic test result with any of the following people: mother, father, sisters, brothers, spouse/partner, daughters, sons, aunts/uncles, or cousins?” Subjects were asked to choose among reasons why they had or had not shared genetic test results with each of those family members and were permitted to select more than one response. For subjects who reported having undergone genetic testing, each participant’s family history and pedigree was reviewed to determine that they had at least one living first-degree relative (FDR) and at least 1 living second- or third-degree relative (SDR/TDR). Subjects who indicated they had shared their genetic test result with their mother, father, brothers, sisters, or children were classified as having disclosed the result to an FDR. Subjects who indicated they had shared their result with uncles, aunts, or cousins were classified as having disclosed results to an SDR/TDR. Subjects without at least one living FDR or SDR/TDR were not included in the corresponding analysis. The potential effects of clinical and demographic factors on the decision to disclose genetic test results were explored using univariate tests of association (Fisher Exact test and Student t test). Factors that were found to be significant on univariate analysis or that were believed to have empiric clinical relevance were included in multivariable logistic regression models to identify variables associated with sharing genetic test results with FDRs and SDRs/TDRs. Generalized estimating equations were used to account for potential clustering of results among members of the same family. Analyses were performed using SAS software (SAS Institute, Cary, NC). All P values are 2-sided and a P value of less than .05 was considered significant. Most of the 174 subjects who reported having undergone genetic testing for Lynch syndrome were women (70%), white (91%), college graduates (69%), and married (76%). The mean age of the participants was 46.7 years (range, 18–79 y). More than half of study participants (61%) had a cancer diagnosis, and 104 (60%) individuals had a confirmed positive genetic mutation associated with Lynch syndrome (Table 1).Table 1Characteristics of the Study Population (N = 174) and Univariate Analysis of Factors Predicting Disclosure of Genetic Test Results to Any Family Members Beyond First DegreeCharacteristicsAll subjects who had genetic testing (N = 174)Subject disclosure to family membersTold beyond FDR (N = 109)aThere were 162 subjects who indicated they have at least 1 SDR or TDR to tell.Did not tell beyond FDR (N = 53)aThere were 162 subjects who indicated they have at least 1 SDR or TDR to tell.P valuebComparison between subjects who did and did not tell beyond FDRs, the Fisher exact test was used for all categoric variables; the t test was used for all continuous variables.Frequency%Frequency%Frequency%Mean age (range)46.718–7945.9645.26.73Sex.20 Male5229.92859.61940.4 Female12270.18170.43429.6Race.15 White15790.89665.35134.7 Non-white169.31386.7213.3 Unknown/missing1—Education.72 Less than college graduate5331.03469.41530.6 At least college graduate11869.07365.83834.2 Unknown/missing3—2———Marital status1.00 Married13275.98166.940(33.1) Not married3821.82668.412(31.6) Unknown/missing42.32—1—Cancer diagnosis.50 Yes10660.96669.52930.5 No6839.14364.22435.8Test results.03 Positive10459.87375.32424.7 Indeterminate4727.02457.11842.9 True negative2313.21252.21147.8Cancer worry.55 Low5833.53566.01834.0 Moderate6537.64472.11727.9 High5028.93062.51837.5 Unknown/missing1—Prior genetic testing in family1.00 Yes12873.68267.24032.8 No3922.42468.61131.4 Do not know74.03—2—Mutation previously identified in family.48 Yes11364.97569.43330.6 No6135.13463.02037.0History of Lynch syndrome cancer in 1 or more relatives1.00 Yes15589.19867.14832.9 No1910.91168.8531.2Mean number of relatives with Lynch syndrome cancers3.71 (±2.0)4.04 (±2.1)3.38 (±1.8).05Subjects with children.72 Yes12270.17668.53531.5 No5229.93364.71835.3Ever evaluated in a genetics/high-risk clinic.78 Yes15489.09867.64732.4 No1911.01062.5637.5 Unknown/missing1—1———NOTE. Bolded entries have a significance of P ≤ .05.a There were 162 subjects who indicated they have at least 1 SDR or TDR to tell.b Comparison between subjects who did and did not tell beyond FDRs, the Fisher exact test was used for all categoric variables; the t test was used for all continuous variables. Open table in a new tab NOTE. Bolded entries have a significance of P ≤ .05. Overall, 171 of 174 (98%; 95% confidence interval, 95–100) subjects reported that they had shared their genetic test result with at least one FDR (Figure 1). Only 5 subjects with a living parent reported that they had not disclosed their genetic test results to their mother or father, 4 had not disclosed their results to a sister, and 2 had not informed a brother. Nearly 90% of subjects with children informed their sons or daughters of their test result, and most of the others indicated that they would wait until their children were older before discussing the testing. There were no observed differences in rates of disclosure to FDRs by probands’ genetic test results or sex. Overall, 109 of 162 (67%) subjects with living second- or third-degree family members reported that they had shared their genetic test result with one or more of these SDRs/TDRs (Figure 1). Of the 97 individuals whose genetic test result showed a pathogenic mutation (positive test), 73 (75%) disclosed their test result to a relative beyond their nuclear family. Rates of disclosure to SDRs/TDRs were significantly lower among subjects with indeterminate or true negative results, with only 24 of 42 (57%) and 12 of 23 (52%), respectively, indicating they had shared test results with relatives beyond first degree (P = .03) (Table 1). In univariate analysis, subjects who had more relatives diagnosed with cancers associated with Lynch syndrome appeared more likely to share their genetic test result with family members beyond FDRs (P = .05) (Table 1). Aside from the genetic test result, there were no other significant associations between the disclosure of genetic test result to an SDR/TDR and probands’ sociodemographic characteristics such as sex, age, level of education, race, marital status, having children, and personal history of cancer. Similarly, individuals with a higher level of cancer worry, previous history of genetic testing in the family, or prior evaluation at a high-risk/genetics clinic were not more likely to disclose their result to SDRs/TDRs (Table 1). There were no differences in rates of disclosure of genetic test results among subjects enrolled from any of the 4 study sites. In multivariate analysis controlling for subjects’ sex and personal and family history of cancer, having a genetic test result that revealed a pathogenic mutation was the only significant predictor of disclosing the test result to one or more SDRs/TDRs (odds ratio, 2.49; 95% confidence interval, 1.14–5.40) (Table 2).Table 2Multivariate Analysis of Factors Predicting Disclosure to any Family Members Beyond First DegreeCharacteristicOdds ratio (95% CI)P valuePersonal history of cancer Yes1.23 (0.61–2.51).57 No—Sex Female1.68 (0.82–3.44).17 Male—Positive mutation carrier Yes2.49 (1.14–5.40).02 No—Mean number of relatives with Lynch syndrome cancers0.13aParameter estimate..21NOTE. Analysis used generalized estimating equation to control for family effects, with exchangeable working correlation = −0.02. Bold entry has a significance of P <.05.a Parameter estimate. Open table in a new tab NOTE. Analysis used generalized estimating equation to control for family effects, with exchangeable working correlation = −0.02. Bold entry has a significance of P <.05. Subjects were asked to choose from a list of reasons why they had or had not disclosed genetic test results to one or more family members (Figure 2). The most frequently cited reasons for sharing a genetic test result with family members were as follows: (1) to inform them of their risk, (2) to encourage testing, and (3) to obtain emotional support. Only 1 in 10 respondents reported that they informed their family members of their genetic test result because their physician told them to do so. The most frequently cited reasons for not sharing genetic test results were as follows: (1) they were not close to their family members, (2) concern that family members would not understand the test result, and (3) they did not want relatives to worry. Only 3 individuals listed concerns about confidentiality as a reason why they did not share their test result. None listed guilt about their result as a reason for not sharing information about their testing. Among other reasons were wanting to wait until young children were older before informing them about results of genetic tests, inability to contact specific family members, and concern that the information would be too distressing. Although 53 of 162 (32.7%) individuals with living SDRs/TDRs said they did not share genetic test results beyond their immediate family, only 26 (15%) reported that they had deliberately withheld their genetic test results from any family member. In a multicenter study of 174 individuals who had undergone genetic testing for Lynch syndrome, we found that nearly all (98%) had disclosed their test results to FDRs; and two thirds had shared these results with more distant family members such as cousins, aunts, or uncles. Seventy-three of 97 (75%) subjects whose testing identified a gene mutation communicated this result to one or more SDRs/TDRs. Having a true positive genetic test result was the only clinical or demographic factor significantly associated with disclosure of a genetic test result to relatives beyond the immediate family. To date, most of the research examining family communication about genetic testing has focused on individuals undergoing evaluation for hereditary breast and ovarian cancer syndrome. These studies have shown that most patients that are tested for BRCA 1 and 2 mutations inform their FDRs of their genetic test result; however, communication to more distant relatives occurs less frequently.8Claes E. Evers-Kiebooms G. Boogaerts A. et al.Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients.Am J Med Genet A. 2003; 116: 11-19Crossref Scopus (198) Google Scholar In the predominantly female BRCA 1 and 2 cohorts, patients were more likely to disclose genetic test results to other female family members rather than to male relatives also at risk,8Claes E. Evers-Kiebooms G. Boogaerts A. et al.Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients.Am J Med Genet A. 2003; 116: 11-19Crossref Scopus (198) Google Scholar, 9Patenaude A.F. Dorval M. DiGianni L.S. et al.Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell.J Clin Oncol. 2006; 24: 700-706Crossref PubMed Scopus (136) Google Scholar and positive results were more likely to be shared, as compared with negative or uninformative test results.8Claes E. Evers-Kiebooms G. Boogaerts A. et al.Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients.Am J Med Genet A. 2003; 116: 11-19Crossref Scopus (198) Google Scholar, 9Patenaude A.F. Dorval M. DiGianni L.S. et al.Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell.J Clin Oncol. 2006; 24: 700-706Crossref PubMed Scopus (136) Google Scholar Previous studies on disclosure of genetic test results in Lynch syndrome families, each of which reported on fewer than 40 subjects, also found that genetic test results are disclosed less frequently to at-risk relatives outside the nuclear family.10Peterson S.K. Watts B.G. Koehly L.M. et al.How families communicate about HNPCC genetic testing: findings from a qualitative study.Am J Med Genet C Semin Med Genet. 2003; 119: 78-86Crossref Scopus (133) Google Scholar, 11Gaff C.L. Collins V. Symes T. et al.Facilitating family communication about predictive genetic testing: probands’ perceptions.J Genet Couns. 2005; 14: 133-140Crossref PubMed Scopus (85) Google Scholar, 12Mesters I. Ausems M. Eichhorn S. et al.Informing one’s family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study.Fam Cancer. 2005; 4: 163-167Crossref PubMed Scopus (62) Google Scholar One study suggested that male probands were less likely than female probands to communicate genetic test results to family members11Gaff C.L. Collins V. Symes T. et al.Facilitating family communication about predictive genetic testing: probands’ perceptions.J Genet Couns. 2005; 14: 133-140Crossref PubMed Scopus (85) Google Scholar and proposed that male patients might require additional counseling resources to ensure appropriate communication of results. Our findings, from a much larger Lynch syndrome cohort, show that probands’ sex, race, cancer history, and concerns about privacy and confidentiality do not appear to influence most patients’ decisions about sharing genetic test results with family; however, the genetic test result is still a significant factor. Most subjects who did not disclose test results said they did not intentionally withhold this information. The fact that disclosure was nearly universal among FDRs, but occurred less frequently among more distant relatives, suggests that subjects may not be fully aware of the potential impact of their genetic test result on health care of SDRs/TDRs and/or may encounter other barriers to communicating results to more distant relatives. Why is sharing genetic test results important for other relatives in a family with Lynch syndrome? In the case of a true positive test, identifying a clearly pathogenic gene mutation in a proband confirms the diagnosis and allows unaffected family members to ascertain their cancer risk through informative (and less expensive) mutation-specific testing. A true positive genetic test result affects clinical management for FDRs, SDRs, and TDRs, who, through testing, would learn whether they require high-risk cancer screening. By comparison, a true negative genetic test result (which occurs when an individual tests negative for a mutation previously identified in the family) changes clinical management for only the tested individual and his/her progeny (children/grandchildren), providing reassurance that they did not inherit the increased cancer risk. Because a true negative test result does not change management for other relatives who are not direct descendants, lower rates of disclosure of true negative test results to SDRs/TDRs might be expected. In the case of an “indeterminate/uninformative” genetic test result (which occurs when an individual’s genetic test result does not reveal a mutation and there has not been a mutation previously identified in the family), the diagnosis of Lynch syndrome can be neither confirmed nor rejected and the importance of disclosing this test result is less obvious. However, an indeterminate/uninformative result still may have clinical relevance. Discussion of the genetic testing provides an opportunity to share information about Lynch syndrome with other family members who may be at risk and may benefit from specialized cancer surveillance. In our cohort more than half of the subjects with an indeterminate/uninformative genetic test result met Amsterdam Criteria and still would be considered at risk for Lynch syndrome. Overall, our results show that in most cases information about a genetic test result does reach members of the immediate and extended family. In 75% of cases in which a pathogenic mutation was identified, this information was shared with one or more SDRs/TDRs. If this information led other family members to get tested, this would support models of cost effectiveness for genetic testing, suggesting benefits are likely to extend to family members beyond the proband and his/her immediate family. With regard to individuals with an indeterminate genetic test result, our finding that rates of disclosure to SDRs/TDRs are significantly lower (57%) may reflect the difficulty in interpreting the clinical significance of an uninformative result and conveying this information in a way patients and their families can understand. Some prior studies have suggested that individuals with an indeterminate genetic test result may be falsely reassured that their cancer risk is now lower because there was no mutation identified, and may not feel that information about the genetic test result is important to disseminate.8Claes E. Evers-Kiebooms G. Boogaerts A. et al.Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients.Am J Med Genet A. 2003; 116: 11-19Crossref Scopus (198) Google Scholar One of the major challenges in improving the effectiveness of genetic testing for cancer prevention is to develop ways to distribute this information to family members and health care providers. At present, most genetic testing is conducted in specialized centers where patients meet with genetic counselors before and after disclosure of their genetic test result. It generally is accepted that health care providers have an obligation to inform probands of implications of the genetic diagnosis for other family members and encourage them to share their test result with relatives.13Offit K. Groeger E. Turner S. et al.The “duty to warn” a patient’s family members about hereditary disease risks.JAMA. 2004; 292: 1469-1473Crossref PubMed Scopus (210) Google Scholar In the United States, privacy laws prevent physicians from disseminating this information without a patient’s consent. However, simply telling patients that they need to inform family members of their genetic test result may not be enough. Our findings suggest that even under ideal conditions, some patients do not inform relatives of their genetic test result, in many cases because of concerns their family members will worry, or will not understand, or because they are not close. Providing patients with a detailed letter describing the implications of the test result and giving them an annotated copy of the family tree indicating which family members should receive genetic testing information may help ensure that this information is shared with others who may benefit. There are several limitations to consider in this study. Subjects who were willing to spend 30 minutes completing study questionnaires may have been more motivated and thus more likely to communicate their test result to family members, or more likely to report that they had. We asked subjects whether they had shared their genetic test result with specific types of relatives (sisters, aunts, cousins, and so forth); however, we did not have total counts of each proband’s living relatives, so it was not possible to calculate the proportion of at-risk relatives informed of genetic test results. We did not have any way to confirm that subjects actually shared genetic testing information with relatives who were at risk, nor could we assess the quality of the communication or the accuracy of the information transmitted to family members. Consequently, our findings may overestimate the true rates of genetic test disclosure. Finally, our study did not collect information about outcomes of disclosure of genetic testing information to relatives; therefore we could not ascertain whether clinical care of family members changed as a result of genetic testing. Despite these limitations, our report provides useful data about patterns of communication about genetic testing in Lynch syndrome families. Our study of patients from 4 US cancer centers shows that genetic test results often are shared with members of the immediate family, but less often are communicated to more distant at-risk relatives. Because it is expected that a greater share of genetic testing will move from specialized cancer centers to physician’s private offices, it is important to develop and implement strategies that will help patients communicate with family members about genetic testing. Specific interventions, such as providing patients with documentation of their genetic test result and screening recommendations and providing them with strategies for disseminating their test result to at-risk family members, may help to remove barriers to family communication and to improve effectiveness of genetic testing for cancer prevention." @default.
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• W2021303737 title "Sharing Genetic Test Results in Lynch Syndrome: Communication With Close and Distant Relatives" @default.
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• W2021303737 cites W2099342566 @default.
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