Rapidly evolving genetic and genomic technologies for genetic cancer risk assessment (GCRA) are revolutionizing the approach to targeted therapy and cancer screening and prevention, heralding the era of personalized medicine. Although academic health centers have traditionally led the diffusion of new technologies into community practice, commercial availability and marketing of genetic testing have accelerated the uptake of testing in the community setting, where clinicians are often inadequately prepared to select, apply, and interpret genetic tests. Consequently, many questions remain about the composition of the personalized medicine workforce and challenges related to developing and sustaining best practices in GCRA in the community setting. This article describes some alternate approaches to delivery of high-quality GCRA services that leverage the expertise of the academic health center to promote access and quality care through advanced training and ongoing practice-centered support for community-based clinicians.
Cancer Genetics Overview: Trends and Gaps in State of Knowledge
Although only 5% to 10% of cancers are known to be associated with highly penetrant hereditary syndromes, thousands of cancer cases are attributable to hereditary predisposition, and the magnitude of risk conferred by these altered genes is dramatic.1 More than 50 cancer-associated syndromes have a genetic basis, and several new cancer-associated genes are reported every year.2 Genetic tools play an increasing role in risk assessment and testing interventions for a broad spectrum of common cancers.3
The GCRA process, which incorporates genetic analysis and empiric risk models to estimate cancer risk and provide personalized, risk-appropriate cancer screening and risk-reduction strategies for individuals and families, requires knowledge of genetics, oncology, and patient and family counseling skills, and involves more provider time than most other clinical services.1,4
Risk assessment for many highly penetrant cancer predisposition syndromes has clear clinical efficacy. GCRA increases adherence to surveillance, which is associated with diagnosis of earlier-stage tumors.5 Numerous studies have shown the sensitivity of breast MRI in women who are BRCA-positive.6 Retrospective studies of BRCA carriers indicate that adjuvant tamoxifen7 and risk-reduction mastectomy can significantly reduce the risk for new primary breast cancer, up to 50% and 90%, respectively.8 Risk reduction salpingo-oophorectomy provides 90% risk reduction for ovarian cancer and may substantially lower breast cancer risk in premenopausal women with a BRCA mutation.9,10 Insights about the role of BRCA genes in DNA repair have led to the first targeted therapies for BRCA-associated cancers.11 Similarly, strategies for evaluation of hereditary colon cancer risk continue to evolve.12,13 Importantly, colonoscopic screening is effective in early detection and prevention of colon cancer in Lynch syndrome.14
As cancer genetics diagnostic and risk assessment tools move from bench to bedside, broad-spectrum clinical research will be in greater demand to further the understanding of how genetic technologies impact individuals, families, and society at large. Although a growing body of research is addressing questions about psychosocial outcomes and consequences of genetic testing for cancer risk, much more work is necessary to understand factors affecting quality of life and develop appropriate interventions and decision aides. Health services research is also needed to investigate the problems and limitations of delivering cancer genetics services to the larger community, including underserved populations.
Research on cost-effective mechanisms to transfer state-of-the-art cancer genetics technology into clinical practice are needed to enhance cancer prevention and control efforts in the community.15 This challenge is particularly acute for the emerging field of genomics and personalized medicine.16 Recent discoveries from genome-wide association studies (GWAS) of low-penetrance genetic variants with modest associated risk are changing the paradigm of how genetic information is delivered (Figure 1) and challenging clinicians to keep abreast of these advances.17,18
Commercial laboratories are capitalizing on GWAS by offering genome scans for single nucleotide polymorphisms associated with disease risk, and translating that risk into absolute risk estimates using various algorithms. However, little is known about whether these algorithms are well calibrated and the risk estimates provided by genome scans are accurate. A recent small study comparing 2 direct-to-consumer companies found differences in relative risk predictions for cancer, heart disease, diabetes, and other conditions for the same set of individuals, attributed partly to discrepancies in markers used to calculate relative risk and risk determination methods.19 Furthermore, these genomic profiles are of uncertain clinical efficacy, because the reported risk is generally too small to form an appropriate basis for clinical decision-making.20
The recently revised ASCO Policy Statement on genetic and genomic testing highlights the difficulties in assigning clinical efficacy and the potential hazards of non-professionally mediated genetic analyses.17
Transition From the Multidisciplinary Academic Health Center Model to Community-Based GCRA
The earliest GCRA delivery models emerged from the academic health center setting, where GCRA is conducted through one or more consultative sessions with an interdisciplinary team that may include genetic counselors, advanced practice nurses, one or more physicians (generally a medical oncologist or geneticist), and, in some settings, a mental health professional.21 Although many academic health centers across the nation provide comprehensive GCRA services, most people receive medical care in the community setting. Unfortunately, few community-based medical centers are equipped to deliver this service model, because of a lack of adequately trained personnel and an unfavorable reimbursement climate for counseling-dominated care.22–24
Clinical utility of genetic and genomic testing. When considering the future development of germline genetic testing in oncologic care, it is useful to think of tests with regard to their position along 2 axes. The first axis identifies whether or not the test has accepted clinical utility. The second axis describes whether the test was obtained through the mediation of a health care provider (HCP) with whom the individual being tested had an ongoing relationship, or through a direct-to-consumer (DTC) channel. To date, most genetic testing for cancer susceptibility can be categorized as professionally mediated and of accepted clinical utility (quadrant 1). As the fields of oncology and genetics continue to progress and become increasingly intertwined, HCPs will need to develop a working knowledge of tests that fall under the other 3 quadrants.
Abbreviations: MD, doctor; SNP, single nucleotide polymorphism.
From Robson ME, Storm CD, Weitzel J, et al. American Society of Clinical Oncology policy statement update: genetic and genomic testing for cancer susceptibility. J Clin Oncol 2010;28;895. Reprinted with permission. © 2010 American Society of Clinical Oncology. All rights reserved.
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 8, 5; 10.6004/jnccn.2010.0046
Clinical utility of genetic and genomic testing. When considering the future development of germline genetic testing in oncologic care, it is useful to think of tests with regard to their position along 2 axes. The first axis identifies whether or not the test has accepted clinical utility. The second axis describes whether the test was obtained through the mediation of a health care provider (HCP) with whom the individual being tested had an ongoing relationship, or through a direct-to-consumer (DTC) channel. To date, most genetic testing for cancer susceptibility can be categorized as professionally mediated and of accepted clinical utility (quadrant 1). As the fields of oncology and genetics continue to progress and become increasingly intertwined, HCPs will need to develop a working knowledge of tests that fall under the other 3 quadrants.
Abbreviations: MD, doctor; SNP, single nucleotide polymorphism.
From Robson ME, Storm CD, Weitzel J, et al. American Society of Clinical Oncology policy statement update: genetic and genomic testing for cancer susceptibility. J Clin Oncol 2010;28;895. Reprinted with permission. © 2010 American Society of Clinical Oncology. All rights reserved.
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 8, 5; 10.6004/jnccn.2010.0046
Clinical utility of genetic and genomic testing. When considering the future development of germline genetic testing in oncologic care, it is useful to think of tests with regard to their position along 2 axes. The first axis identifies whether or not the test has accepted clinical utility. The second axis describes whether the test was obtained through the mediation of a health care provider (HCP) with whom the individual being tested had an ongoing relationship, or through a direct-to-consumer (DTC) channel. To date, most genetic testing for cancer susceptibility can be categorized as professionally mediated and of accepted clinical utility (quadrant 1). As the fields of oncology and genetics continue to progress and become increasingly intertwined, HCPs will need to develop a working knowledge of tests that fall under the other 3 quadrants.
Abbreviations: MD, doctor; SNP, single nucleotide polymorphism.
From Robson ME, Storm CD, Weitzel J, et al. American Society of Clinical Oncology policy statement update: genetic and genomic testing for cancer susceptibility. J Clin Oncol 2010;28;895. Reprinted with permission. © 2010 American Society of Clinical Oncology. All rights reserved.
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 8, 5; 10.6004/jnccn.2010.0046
Various practice models are evolving to meet the growing demand for GCRA services in the community setting (Table 1).24–26 Some of these models combine efficient patient care with best practices in GCRA. Others may not adequately address important nuances inherent in the GCRA process that inform several aspects of patient care, including optimal testing strategies, appropriate interpretation of uninformative test results, consideration of alternate genetic etiologies, psychosocial and family communication dynamics, and other factors.
The City of Hope Model for Extending Cancer Genetics Expertise to the Community
The City of Hope Division of Clinical Cancer Genetics was established in 1996 to be a national leader in the advancement of cancer genetics, screening, and prevention, through innovative patient care, research, and education. The Division includes the Cancer Screening & Prevention Program Network (CSPPN) for full-spectrum GCRA services, and the Cancer Genetics Education Program (CGEP) developed to educate medical professionals about the emerging science and clinical efficacy of cancer genetics (Figure 2). The CSPPN and CGEP facilitate the integration of genetics services in the community and provide access to a robust program of laboratory and health services research through an institutional review board–approved Hereditary Cancer Registry prospective study protocol.21,27
Initiated in 1996, the Registry has accrued more than 6000 participants with 4 to 5 generation family histories and blood/DNA samples, with associated psychosocial and clinical follow-up data (e.g., screening and risk reduction behavior, risk communication). The consent document and process is explicit about sharing anonymized biospecimens with other investigators. The Registry has facilitated scholarly research created in collaboration with community partners in the realms of genetic epidemiology, biobehavioral health disparities, and health services research. Data from the Registry enable participation in the multi-institutional consortia necessary for assembling sufficient hereditary cases for epidemiologic study.28 Furthermore, locally relevant and practical health services research enabled by the registry has influenced clinical practice guidelines.29,30
Models of Practice for Genetic Cancer Risk Assessment
The program incorporates the clinical research resources of the City of Hope Department of Cancer Screening and Prevention Program and the multifaceted training expertise Cancer Genetics Education Program (CGEP), initiated in 1997 with guidance and expertise from the City of Hope Department of Nursing Education. The Cancer Genetics Career Development Program maximizes the resources and expertise of the CGEP for cancer genetics program leadership training. The program offers multi-institutional academic and research mentorship resources through collaborations with the City of Hope Beckman Research Institute and the Department of Preventive Medicine at University of Southern California. The community clinician education component is detailed in the text. Feedback from patients as stakeholders is accomplished through a series of conferences, with mixed methods of data collection. An advisory committee to the CGEP comprises key faculty in Nursing Research and Education, the Beckman Research Institute, and intra-and extramural professionals from the fields of education, law, bioethics, molecular genetics, and preventive medicine, and community-based advocates.
Abbreviations: APN, advanced practice nurse; CBCRP, Regents of the University of California Breast Cancer Research Program; CSPPN, Cancer Screening & Prevention Program Network; GC, genetic counselor.
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 8, 5; 10.6004/jnccn.2010.0046
The program incorporates the clinical research resources of the City of Hope Department of Cancer Screening and Prevention Program and the multifaceted training expertise Cancer Genetics Education Program (CGEP), initiated in 1997 with guidance and expertise from the City of Hope Department of Nursing Education. The Cancer Genetics Career Development Program maximizes the resources and expertise of the CGEP for cancer genetics program leadership training. The program offers multi-institutional academic and research mentorship resources through collaborations with the City of Hope Beckman Research Institute and the Department of Preventive Medicine at University of Southern California. The community clinician education component is detailed in the text. Feedback from patients as stakeholders is accomplished through a series of conferences, with mixed methods of data collection. An advisory committee to the CGEP comprises key faculty in Nursing Research and Education, the Beckman Research Institute, and intra-and extramural professionals from the fields of education, law, bioethics, molecular genetics, and preventive medicine, and community-based advocates.
Abbreviations: APN, advanced practice nurse; CBCRP, Regents of the University of California Breast Cancer Research Program; CSPPN, Cancer Screening & Prevention Program Network; GC, genetic counselor.
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 8, 5; 10.6004/jnccn.2010.0046
The program incorporates the clinical research resources of the City of Hope Department of Cancer Screening and Prevention Program and the multifaceted training expertise Cancer Genetics Education Program (CGEP), initiated in 1997 with guidance and expertise from the City of Hope Department of Nursing Education. The Cancer Genetics Career Development Program maximizes the resources and expertise of the CGEP for cancer genetics program leadership training. The program offers multi-institutional academic and research mentorship resources through collaborations with the City of Hope Beckman Research Institute and the Department of Preventive Medicine at University of Southern California. The community clinician education component is detailed in the text. Feedback from patients as stakeholders is accomplished through a series of conferences, with mixed methods of data collection. An advisory committee to the CGEP comprises key faculty in Nursing Research and Education, the Beckman Research Institute, and intra-and extramural professionals from the fields of education, law, bioethics, molecular genetics, and preventive medicine, and community-based advocates.
Abbreviations: APN, advanced practice nurse; CBCRP, Regents of the University of California Breast Cancer Research Program; CSPPN, Cancer Screening & Prevention Program Network; GC, genetic counselor.
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 8, 5; 10.6004/jnccn.2010.0046
CSPPN
As a major component of NCI-Comprehensive Cancer Center status, the CSPPN serves as a resource to community medical centers and clinicians who generally would not have the infrastructure and expertise necessary to develop this model of care. A detailed description of the establishment of the CSPPN and City of Hope's hub-and-spoke community outreach program were described previously.21 In brief, community-based centers are contracted with the City of Hope for program development, training in GCRA for personnel, and continuing practice-centered support to promote quality care. The program development activities are tailored to address the needs and resources of each community center. A site assessment may also be conducted by the City of Hope team to identify appropriate physical space for the GCRA sessions, preferably within or adjacent to the community center's medical or surgical oncology services. In addition to a thorough orientation to the City of Hope GCRA protocols, advice and assistance is provided regarding clinic and family history instruments and selection of pedigree database software.
Different Models for Different Settings
The CSPPN has provided comprehensive GCRA services to more than 6000 individuals and their families, with approximately 20% of these stemming from the satellite clinics. In the Cancer Center of Santa Barbara and St. Jude Medical Center, Virginia Crossen Cancer Center affiliates, an advanced practice nurse (APN) credentialed in genetics initiates risk assessment and enrollment in our Hereditary Cancer Registry. Patients are then seen by a CSPPN physician and the APN at a subsequent visit; the physician uses evaluation and management codes to bill for visits.
At Good Samaritan Medical Center in Arizona, an APN with board certification in genetic counseling provides cancer risk counseling and administers the program with clerical support, oversight by a local oncologist, and case-based guidance from the Clinical Cancer Genetics (CCG) Working Group (described later). Another genetic counselor was recently brought onboard to help with increasing referrals. Both counselors see patients independently and generate a patient visit note to the referring physician.
Similarly, with CSPPN support services, St. Joseph's Medical Center in Orange County, California hired a board-certified genetic counselor who completed an advanced 1-year trainee-ship in cancer genetics at the City of Hope to lead their GCRA program. With institutional and multidisciplinary support for the program from a medical oncologist, surgical oncologist, and colorectal surgeon, 2 additional genetic counselors have been hired to handle the increasing referral base. Development of the GCRA program, and accrual to the registry and related research, contributed to successful competition for an NCI community cancer center planning grant.
Additional CSPPN affiliated programs have been developed for underserved and minority communities. The best example is a project to deliver culturally competent GCRA at the Los Angeles County Olive View Medical Center, which serves a predominantly Hispanic community in Southern California. A key element of the program's success is genetic counseling provided by bilingual cancer risk counselors trained in culturally sensitive approaches to GCRA.31 A critical component deemed necessary before program implementation was a commitment from the referring institution to provide risk-appropriate cancer screening and prevention for referred patients and an onsite bilingual patient coordinator to facilitate the process. The project success yielded a grant (Susan G. Komen Breast Cancer Foundation Grant # POP0600464) to examine an emerging social–cognitive theoretical model regarding perceived access to care and post-GCRA behaviors in this population.32
In addition, a recently established tele-health initiative (videoconference-mediated GCRA) between City of Hope and Toiyabe Indian Health Project (Indian Health Service) in Bishop, California is another example of meeting community need (the nearest genetic counseling program is at least a 4-hour drive) while addressing disparities and enhancing related health services research. Alternative modes of GCRA delivery may enable cost-effective community medical center participation. The choice of models depends partly on the availability of qualified staff and the local institutional economic environment. Billing for mid-level services is sometimes possible through facility fee or individual provider codes. Apprising administrators of potential downstream revenue from cancer screening, chemoprevention, and surgical risk-reduction interventions may help them justify underreimbursed program costs.33–35
Quality Assurance in GCRA: CCG Working Group and Topics in Cancer Genetics Research
CSPPN affiliates have ongoing access to the evidence-based updates and practice-centered support essential to sustaining an informed community-based GCRA practice through participation in 2 CME-accredited Web conference activities: CCG Working Group and Topics in Clinical Cancer Genetic Research. CCG Working Group (Figure 3) is an interdisciplinary cancer genetics case conference series conducted each week by the City of Hope clinical team. CSPPN and affiliated clinicians across the United States present cases from their community practices through Microsoft Live Meeting Web conference interface for discussion and recommendations on risk assessment, surveillance, risk management, and identification of research eligibility for cases covering the full spectrum of hereditary cancer. Table 2 provides a summary sampling of recommendations for community-based cases generated during CCG Working Group over a 17-week period.
Topics in Clinical Cancer Genetics is a weekly 1-hour Web seminar series focused on timely issues in clinical cancer genetics, cancer epidemiology, and cancer genetics research, alternating among didactic lectures, case-based literature reviews, and a basic research journal club. City of Hope faculty, guest lecturers from other academic institutions, CSPPN affiliates, and alumni of the City of Hope Intensive Course in Clinical Cancer Genetics (described later) are included in the roster of presenters to ensure that the topics covered address the practice-centered learning needs of the community-based participants.
Clinical Cancer Genetics Working Group. A weekly CME-accredited interdisciplinary cancer genetics case review conference. Participants learn the complex process of multidisciplinary cancer genetics case work and receive hands-on experience in cancer genetics case presentation, risk assessment, and management. Clinical experience gained from the City of Hope Cancer Screening & Prevention Program Network, coupled with multidisciplinary case discussion during the Clinical Cancer Genetics Working Group, form the cornerstone of community practice. Cancer center physicians and medical oncology faculty, fellows, molecular diagnostic laboratory faculty, and visiting community physicians attend in person or through Web conferencing.
Abbreviations: GCRA, genetic cancer risk assessment; MD, doctor.
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 8, 5; 10.6004/jnccn.2010.0046
Clinical Cancer Genetics Working Group. A weekly CME-accredited interdisciplinary cancer genetics case review conference. Participants learn the complex process of multidisciplinary cancer genetics case work and receive hands-on experience in cancer genetics case presentation, risk assessment, and management. Clinical experience gained from the City of Hope Cancer Screening & Prevention Program Network, coupled with multidisciplinary case discussion during the Clinical Cancer Genetics Working Group, form the cornerstone of community practice. Cancer center physicians and medical oncology faculty, fellows, molecular diagnostic laboratory faculty, and visiting community physicians attend in person or through Web conferencing.
Abbreviations: GCRA, genetic cancer risk assessment; MD, doctor.
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 8, 5; 10.6004/jnccn.2010.0046
Clinical Cancer Genetics Working Group. A weekly CME-accredited interdisciplinary cancer genetics case review conference. Participants learn the complex process of multidisciplinary cancer genetics case work and receive hands-on experience in cancer genetics case presentation, risk assessment, and management. Clinical experience gained from the City of Hope Cancer Screening & Prevention Program Network, coupled with multidisciplinary case discussion during the Clinical Cancer Genetics Working Group, form the cornerstone of community practice. Cancer center physicians and medical oncology faculty, fellows, molecular diagnostic laboratory faculty, and visiting community physicians attend in person or through Web conferencing.
Abbreviations: GCRA, genetic cancer risk assessment; MD, doctor.
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 8, 5; 10.6004/jnccn.2010.0046
Expanding the Expertise and Support of the Academic Health Center: The Intensive Course in Community Cancer Genetics and Research Training
Interdisciplinary GCRA training and CME activities are essential to extend the expertise and resources of the academic health center to the community-based setting. Oncology, genetics, nursing, and government health organizations (including ASCO, National Institutes of Health, American Society of Human Genetics, National Society of Genetic Counselors, Oncology Nursing Society, and International Society of Nurses in Genetics) and academic institutions offer cancer genetics seminars, workshops, and Web-based resources. The ASCO Task Force on Cancer Genetics Education produced a curriculum for oncologists and other health care providers entitled Cancer Genetics & Cancer Predisposition Testing, originally published in 1998 and updated in 2004.36,37
In response to the national need for specialized training in cancer risk assessment, the City of Hope conducts an NCI-funded (R25 CA112486) Intensive Course in Community Cancer Genetics and Research Training for community-based genetics and oncology practitioners.38 The goal of the course is to increase the number of clinicians across the nation with practitioner-level competence in GCRA through a combined program of CME-accredited distance-learning didactics, face-to-face training, and post-course professional development activities.
Several CSPPN affiliate clinicians established their formal collaborations with the City of Hope as a consequence of their participation in the course. As depicted in Figure 4, 140 clinicians representing community-based clinical practices in 41 states and Canada, Brazil, Chile, and Spain completed the course as of December 2009. Upon completion of training, all course participants are invited to join the roster of CSPPN affiliates and intensive course alumni who participate in Topics in Clinical Cancer Genetic Research and CCG Working Group for ongoing professional development and case-based support on return to their practice settings.
A Snapshot of Multidisciplinary Quality Control*
Technical Support for the CSPPN
The distance-mediated networking that sustains the CSPPN is enabled by information technology, with videoconferencing for telemedicine and Web conferencing for remote participation in the CCG Working Group, Topics in Cancer Genetics Research, and the distance-mediated learning and professional development activities of the intensive course. The Enterprise (multiclient server) version of Progeny (Progeny Software LLC, South Bend, Indiana) pedigree-drawing software was obtained and customized to the clinical and research needs of CSPPN. Each satellite purchased their own pedigree software license, and the City of Hope database framework with customized fields was distributed to each satellite program. Sending out updated versions of the database framework is critical to seamless compatibility, both for pedigree presentation at the working group and in sharing research data. In addition to technical support from the software company, 2 super users at the cancer center provide assistance with clinical research issues related to the database and interactions with the cancer center master database. Scannable forms were developed for clinic and family history questionnaires for use in the CSPPN, including forms for efficient data entry for the registry study.
Conclusions
Once delivered primarily through academic health centers, several alternative delivery models have evolved to extend GCRA services beyond the confines of the academic health care delivery system to the broader community.17,21,24–27 Provision of GCRA is an important growing service for community-based clinicians. Limited health services and psychosocial research has addressed the underserved, underinsured, and many ethnic minorities, partly because of very limited access to GCRA services. Measures to increase access and cost-effectiveness are particularly important given limited available resources to address disparities.3 Recent outcomes from the authors' research program indicate that providing GCRA to underserved Latinas at the Los Angeles County Olive View Medical Center is accepted in the community and prompts increased risk-appropriate follow-up care, despite relatively low acculturation.32,39
The rapid evolution of genetic information and direct-to-consumer and to-physician marketing by commercial genetic testing vendors are prompting a steady increase in the number and spectrum of clinicians who provide GCRA services in the community setting.22,23,40 Despite the push toward non-professionally mediated genetic and genomic testing, ASCO and other leading oncology and genetics professional organizations continue to recommend that pre- and posttest counseling be conducted by clinicians with the necessary skills and experience.17,30,41–43
This article describes the benefits and limitations of several delivery models, focusing on the important role comprehensive cancer centers can take to promote and support high-quality GCRA in their communities. Regardless of the model used to address the demand for more efficient and broader coverage of GCRA services, no model should compromise informed decision-making. Considering the overwhelming interest in City of Hope cancer genetics education programs from busy clinicians from across the United States, quality is still important. A growing number of course alumni continue to participate in the CCG Community of Practice. As the legislative effort to reform health care proceeds, provisions must address current problems related to inadequate coverage for preventive care based on the evidence of cost-effectiveness and benefits of GCRA from the societal perspective.
Distribution and composition of clinician alumni from the City of Hope intensive course in Clinical Cancer Genetics and Research. © Map Resources
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 8, 5; 10.6004/jnccn.2010.0046
Distribution and composition of clinician alumni from the City of Hope intensive course in Clinical Cancer Genetics and Research. © Map Resources
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 8, 5; 10.6004/jnccn.2010.0046
Distribution and composition of clinician alumni from the City of Hope intensive course in Clinical Cancer Genetics and Research. © Map Resources
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 8, 5; 10.6004/jnccn.2010.0046
The research and education programs described in this manuscript were supported by several sources of funding: Cancer Genetics Education Program supported in part by National Cancer Institute Grants 2R25 CA75131, R25 CA112486, and R25 CA85771, and by Project # MCHG-51 from the Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services. Underserved outreach programs were supported in part by California Cancer Research Program Grant Number 00-92133, and by project # POP0600464 from Susan G. Komen for the Cure. The Registry and The City of Hope Center for Cancer Genetics Technology Transfer Research was supported in part by the California Cancer Research Program, Grant No. 99-86874, and by a general clinical research center grant from NIH (M01 RR00043) awarded to the City of Hope National Medical Center, Duarte, California.
The authors wish to thank all the community colleagues and administrators who played important roles in the development of the network sites, including Frederick Kass, MD; Clarence Petrie, MD; Ian Grady, MD; Anita Gregory, MD; David King, MD (in memoriam); Kimberly Banks, MS, CGC; David Margileth, MD; Joan Taylor, MBA; Patty Dock, MS, CGC; Jane Congleton, RN, MS, CGC; Nancy Feldman, MD; Lori Viveros, MPH, CHES; Taema Weiss, MD; and Ellen B. Castleman, BS, RTT.
References
- 1.↑
Weitzel JN. Genetic cancer risk assessment: putting it all together. Cancer 1999;86(11 Suppl):2483–2492.
- 2.↑
Lippman SM, Hawk ET. Cancer prevention: from 1727 to milestones of the past 100 years. Cancer Res 2009;69:5269–5284.
- 3.↑
Institute of Medicine (IOM). Cancer-related genetic testing and counseling: workshop proceedings. Institute of Medicine: Washington, DC; 2007.
- 4.↑
DeMarco TA, Smith KL, Nusbaum RH et al.. Practical aspects of delivering hereditary cancer risk counseling. Semin Oncol 2007;34:369–378.
- 5.↑
Halbert CH, Lynch H, Lynch J et al.. Colon cancer screening practices following genetic testing for hereditary nonpolyposis colon cancer (HNPCC) mutations. Arch Intern Med 2004;164:1881–1887.
- 6.↑
Warner E, Messersmith H, Causer P et al.. Systematic review: using magnetic resonance imaging to screen women at high risk for breast cancer. Ann Intern Med 2008;148:671–679.
- 7.↑
Narod SA, Brunet JS, Ghadirian P et al.. Tamoxifen and risk of contralateral breast cancer in BRCA1 and BRCA2 mutation carriers: a case-control study. Hereditary Breast Cancer Clinical Study Group. Lancet 2000;356:1876–1881.
- 8.↑
Rebbeck TR, Friebel T, Lynch HT et al.. Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: the PROSE study group. J Clin Oncol 2004;22:1055–1062.
- 9.↑
Finch A, Beiner M, Lubinski J et al.. Salpingo-oophorectomy and the risk of ovarian, fallopian tube, and peritoneal cancers in women with a BRCA1 or BRCA2 mutation. JAMA 2006;296:185–192.
- 10.↑
Rebbeck TR, Kauff ND, Domchek SM. Meta-analysis of risk reduction estimates associated with risk-reducing salpingo-oophorectomy in BRCA1 or BRCA2 mutation carriers. J Natl Cancer Inst 2009;101:80–87.
- 11.↑
Fong PC, Boss DS, Yap TA et al.. Inhibition of poly(ADP-ribose) polymerase in tumors from BRCA mutation carriers. N Engl J Med 2009;361:1–12.
- 12.↑
Lynch HT, Casey MJ, Snyder CL et al.. Hereditary ovarian carcinoma: heterogeneity, molecular genetics, pathology, and management. Mol Oncol 2009;3:97–137.
- 13.↑
Markowitz SD, Bertagnolli MM. Molecular basis of colorectal cancer. N Engl J Med 2009;361:2449–2460.
- 14.↑
Jarvinen HJ, Renkonen-Sinisalo L, Aktan-Collan K et al.. Ten years after mutation testing for Lynch syndrome: cancer incidence and outcome in mutation-positive and mutation-negative family members. J Clin Oncol 2009;27:4793–4797.
- 15.↑
Flowers CR, Veenstra D. The role of cost-effectiveness analysis in the era of pharmacogenomics. Pharmacoeconomics 2004;22:481–493.
- 16.↑
Yang Q, Flanders WD, Moonesinghe R et al.. Using lifetime risk estimates in personal genomic profiles: estimation of uncertainty. Am J Hum Genet 2009;85:786–800.
- 17.↑
Robson M, Storm C, Weitzel JN et al.. American Society of Clinical Oncology policy statement update: genetic and genomic testing for cancer susceptibility. J Clin Oncol 2010;28;893–901.
- 19.↑
Ng PC, Murray SS, Levy S, Venter JC. An agenda for personalized medicine. Nature 2009;461:724–726.
- 21.↑
MacDonald DJ, Sand S, Kass FC et al.. The power of partnership: extending comprehensive cancer center expertise in clinical cancer genetics to breast care in community centers. Semin Breast Dis 2006;9:39–47.
- 22.↑
Zon RT, Goss E, Vogel VG et al.. American Society of Clinical Oncology policy statement: the role of the oncologist in cancer prevention and risk assessment. J Clin Oncol 2009;27:986–993.
- 23.↑
Geier LJ, Mulvey TM, Weitzel JN. Clinical cancer genetics remains a specialized area: how do I get there from here? ASCO 2009 Educational Book: Practice Management and Information Technology. Alexandria, VA: American Society of Clinical Oncology; 2009.
- 24.↑
Wham D, Vu T, Chan-Smutko G et al.. Assessment of clinical practices among cancer genetic counselors. Fam Cancer 2010; in press.
- 25.
Cohen SA, McIlvried D, Schnieders J. A collaborative approach to genetic testing: a community hospital's experience. J Genet Couns 2009;18:530–533.
- 26.↑
Allain D, Baker M, Blazer K et al.. Evolving models of cancer risk genetic counseling. Perspectives in Genetic Counseling 2010;in press.
- 27.↑
Blazer KR, Grant M, Sand SR et al.. Development of a cancer genetics education program for clinicians. J Cancer Educ 2002;17:69–73.
- 28.↑
Weitzel JN, Lagos VI, Herzog JS et al.. Evidence for common ancestral origin of a recurring BRCA1 genomic rearrangement identified in high-risk Hispanic families. Cancer Epidemiol Biomarkers Prev 2007;16:1615–1620.
- 29.↑
Daly MB, Axilbund JE, Bryant E et al.. NCCN clinical practice guidelines in oncology: genetic/familial high-risk assessment: breast and ovarian. version 1, 2009. Available at: http://www.nccn.org/professionals/physician_gls/PDF/genetics_screening.pdf. Accessed June 15, 2009.
- 30.↑
Weitzel JN, Lagos VI, Cullinane CA et al.. Limited family structure and BRCA gene mutation status in single cases of breast cancer. JAMA 2007;297:2587–2595.
- 31.↑
Ricker C, Lagos V, Feldman N et al.. If we build it ... will they come?—establishing a cancer genetics services clinic for an underserved predominantly Latina cohort. J Genet Couns 2006;15:505–514.
- 32.↑
Lagos VI, Perez MA, Ricker CN et al.. Social cognitive aspects of underserved Latinas preparing to undergo genetic risk assessment for hereditary breast and ovarian cancer. Psychooncology 2008;17:774–782.
- 33.↑
Ho C. How to develop and implement a cancer genetics risk assessment program: clinical and economic considerations. Oncology Issues 2004;19:22–26.
- 34.
Pirzadeh S. Starting a cancer genetics clinic in a county hospital. Oncology Issues 2009;24:38–43.
- 35.↑
MacDonald DJ. Establishing a cancer genetics service. In: Kuerer H, ed. Kuerer's Breast Surgical Oncology. 1st ed. New York: McGraw-Hill; In Press.
- 36.↑
ASCO Curriculum Cancer Genetics & Cancer Predisposition Testing. 1st ed. Alexandria, VA: ASCO Publishing; 1998.
- 37.↑
ASCO Curriculum Cancer Genetics & Cancer Predisposition Testing. 2nd ed. Alexandria, VA: ASCO Publishing; 2004.
- 38.↑
Blazer KR, MacDonald DJ, Ricker C et al.. Outcomes from intensive training in genetic cancer risk counseling for clinicians. Genet Med 2005;7:40–47.
- 39.↑
Lagos VI, Blazer KR, Viveros L et al.. Impact of genetic cancer risk assessment on cancer screening and prevention behaviors in an underserved predominantly Latina population [abstract]. Presented at the National Latino Cancer Summit; San Francisco, California; July 31, 2008.
- 40.↑
ACOG Practice Bulletin No. 103: hereditary breast and ovarian cancer syndrome. Obstet Gynecol 2009;113:957–966.
- 41.↑
Oncology Nursing Society. Cancer Predisposition Genetic Testing and Risk Assessment Counseling. Available at: http://www.ons.org/Publications/Positions/Predisposition. Accessed March 9, 2010.
- 42.
Trepanier A, Ahrens M, McKinnon W et al.. Genetic cancer risk assessment and counseling: recommendations of the National Society of Genetic Counselors. J Genet Couns 2004 2004;13:83–114.
- 43.↑
Burt RW, Barthel JS, Dunn KB et al.. NCCN clinical practice guidelines in oncology: colorectal cancer screening. version 1, 2010. Available at: http://www.nccn.org/professionals/physician_gls/PDF/colorectal_screening.pdf. Accessed March 9, 2010.
