New Brunswick Strategic Planning Proposal Proposal Title: Establishing the only New Jersey Masters-level Genetic Counseling Training Program at Rutgers University Proposal Initiators: Gary Heiman, Linda Brzustowicz, Elena Ashkinadze, Hetal Vig, and Christine Seymour Primary Contact Name and Phone Number: Gary Heiman, PhD- 732-445-1027 Ext: 40033 Primary Contact Email Address: Heiman@biology.rutgers.edu Primary Strategic Priority/Foundational Element/Integrating Theme Addressed (Select one) Envision Tomorrow s University Build Faculty Excellence Transform the Student Experience Enhance Our Public Prominence Strong Core of Sciences and Humanities Inclusive, Diverse, and Cohesive Culture Effective and Efficient Infrastructure and Staff Financial Resources Sufficient to Fund Our Aspirations Robust Shared Governance, Academic Freedom, and Effective Communication Cultures, Diversity, and Inequality Local and Global _X_ Improving the Health and Wellness of Individuals and Populations Creating a Sustainable World through Innovation, Engineering, and Technology Educating Involved Citizens and Effective Leaders for a Dynamic World Creative Expression and the Human Experience Measuring Progress and Defining Success 1
Proposal Abstract (brief summary of the proposal 250-word limit): The National Society of Genetic Counselors (NSGC) defines genetic counseling as "...the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease" (NSGC website). Genetic counselors are health care professionals who have graduate-level training in medical genetics and counseling. They provide information and support to families and their children impacted by genetic conditions and/or traits. In addition, they serve as educators and a referral source to all health care providers. With the ongoing advances in human genetics, there is an increasing need for more trained genetic counselors. However, there are only 32 accredited Master s degree programs in genetic counseling in the US. With the typical class size ranging between 4-25 students, these programs are quite competitive with acceptance rates under 8 percent. With the recent integration of RWJMS and RCINJ into the Rutgers system, this institution is uniquely poised to develop New Jersey s only master s program in Genetic Counseling. Rutgers already has the units that can teach the didactic courses including basic science (Department of Genetics), medical genetics (RWJMS), cancer genetics (RCINJ), and psychological counseling (GSAPP). In addition, Rutgers, RWJMS, and RCINJ have existing clinical rotation placements in prenatal, pediatric, and cancer genetic counseling. The field of Genetic Counseling is rapidly evolving and the State of New Jersey is recognizing the importance of the field by granting licensure starting in 2014. We are proposing to establish the only Genetic Counseling training program in New Jersey at Rutgers University. 2
Full Proposal Description (5-page limit) [Insert here the full proposal, which should describe in detail a) what is being proposed, b) how the initiative aligns with the University Strategic Plan, c) any additional themes, priorities, and elements addressed, d) who will be involved, e) desired outcomes, and f) anticipated resources to support this initiative.] 1) What is a Genetic Counselor? Genetic counselors are Master s-trained health care professionals who combine their knowledge of basic science, medical genetics, epidemiological principles, and counseling theory with their skills in genetic risk assessment, education, interpersonal communication and counseling to provide services to clients and their families for a diverse set of genetic or genomic indications. The National Society of Genetic Counselors defines genetic counseling as the process of helping people understand and adapt to the medical, psychological, and familial implications of genetic contributions to disease. Genetic counselors aim to provide information and support to families and their children impacted by genetic conditions and/or traits. In order to provide this support, genetic counselors evaluate family and medical histories to assess the chance of disease occurrence or recurrence. They educate families, physicians, and other medical professionals about disease inheritance, appropriate genetic testing, management of disease and management of testing results, and then provide support resources for the disorder in question. They also inform individuals about ongoing genetic research in the disorder they are discussing. As defined by the National Society of Genetic Counselors, the responsibilities of a genetic counselor are threefold: to provide expertise in clinical genetics, to counsel and communicate with patients on matters of clinical genetics, and to provide genetic counseling services in accordance with professional ethics and values. The process of genetic counseling aims to promote informed choices and adaptation to the risk or condition pertaining to a family. Genetic counselors are employed in many settings such as medical centers, physician offices, health maintenance organizations, advocacy organizations, governmental agencies, public health departments and biotechnology companies. Those in clinical practice provide education and counseling in areas including reproductive genetics, infertility and pre-implantation genetic diagnosis, pediatric genetics, newborn screening follow-up, cancer genetics, neurogenetics, and cardiovascular genetics. However, these roles are expanding into all areas of medicine include pharmacogenetics. Many genetic counselors are actively involved in teaching and research. The profession is growing rapidly with the number of certified genetic counselors increasing over 400 % since 1992. 2) How are Genetic Counselors trained? Students applying to Genetic Counseling programs often have a Bachelor s degree in biological or social sciences, or relevant related field. As part of the Master s program in Genetic counseling, this knowledge base is expanded upon. Course work during the 2-year Master s program focuses on the principles of human genetics and clinical genetics, as well as the applicability of related sciences to medical genetics. Other courses may emphasize psychosocial aspects of the field, including theories of counseling, interviewing techniques, family dynamics, multicultural sensitivity and crisis intervention. Social, ethical and legal issues in genetics are also included in the curriculum. Coursework in health care and principles of public health are incorporated in the training. A thesis project to demonstrate clinical or laboratory methodologies is also required before degree completion. Students not only have didactic training, but also have clinical fieldwork experiences throughout their program. Clinical placements aim to provide students with opportunities to have first-hand 1
experience with individuals and families affected by a broad range of genetic conditions. These experiences expose students to the natural history and management of genetic conditions and birth defects and to the associated psychosocial issues. Clinical cases are reviewed before program completion and must illustrate a diverse and well-rounded training that prepares the student to provide effective genetic counseling services within a variety of practice settings. After completion of a Master s degree program, genetic counselors must demonstrate the Practice- Based Competencies as defined by the Accreditation Council of Genetic Counselors to manage a genetic counseling case before, during, and after the clinic visit or session. Therefore, the didactic and clinical training components of a curriculum must support the development of these competencies so that following degree completion, students are well prepared to sit for the national ABGC Certification Examination. 3) Why is there a need to establish a new Genetic Counseling Program? How does this need align with the University Strategic Plan? Currently, there are 32 graduate programs in Genetic Counseling across the US. However, most of these are quite small accepting less than 10 students each year making these programs quite competitive with acceptance rates lower than 8%. With the ongoing advances human genetics, there is an ever increasing need for more trained genetic counselors. Interestingly, as indicated by the University Strategic Plan, some of our peer and aspirational peer universities have graduate programs in Genetic Counseling. For example, peer universities like University of California Irvine, University of Colorado, Indiana University, University of Maryland, Ohio State University, and University of Pittsburgh each have a program. In addition, two of our aspirational peer universities have a program: University of Michigan and University of Wisconsin. Thus, a competitive master s program in Genetic Counseling would enhance our public prominence. With regard to the foundational elements and integrating themes of the University s Strategic Plan, a master s program in Genetic Counseling would cut across disciplines of science, psychological counseling, education, and advocacy. At its core, Genetic Counseling s main theme is to improve the health and wellness of individuals across populations. The prevalence of many genetic disorders varies widely across populations (e.g., Tay-Sachs, sickle cell anemia, thalassemia and cystic fibrosis). It is important that individuals from different populations understand their risk for having a child with these conditions and to improve the health of those affected with a genetic disorder. Genetic Counselors advocate for their clients and are leaders in public health. As genetics of common adult onset disorders become better understood (e.g., cancer, cardiovascular disease, neurologic disease), primary and secondary prevention measures may be implemented for those at high risk resulting in a healthier adult population. Advances in genetics are occurring at a rapid pace that challenges our ability to respond to the many social, legal, ethical, and public health policy implications that stem from this increase in genetic information. Consequently, there is a compelling need to prepare future public health professionals in the biology, and application of genetic information, which will play an increasing role in our understanding of health and disease. Genetic Counselors advocate for their clients and are leaders in public health as it relates to the responsible use and dissemination of genetic information. The School of Public Health could also be involved in this genetic counseling training program. The courses needed for this training program could be used by various health professionals within the Rutgers system including nurses, physicians, physician assistant, social workers, etc. For example, the Medical Genetic Course would be open to students in other units including medical students and students within the Graduate School of Biomedical Sciences. 2
4) Why is Rutgers positioned to start a program? With the integration of the former UMDNJ, including RWJMS and the RCINJ, into Rutgers University, we are uniquely positioned to establish a graduate-level Genetic Counseling Training Program. The direct access to both advanced genomics technologies at the Department of Genetics and RUCDR as well as direct access to clinical resources at RWJMS and RCINJ will provide students with the needed interface between human and medical genetics with basic genetics in which to learn and develop professionally. In addition, the Department of Genetics developed an undergraduate program in Genetic Counseling, the Genetic Counseling Certificate Program (GCCP). The GCCP program is intended for a select group of students interested in applying to the masters-level programs in genetic counseling. The goal is to provide students with guidance, coursework, and relevant clinical experience to improve their graduate school applications. Thus far, the GCCP has been quite successful in getting students into the competitive masters-level programs but the students must go out of state to attend graduate school. Furthermore, the success of the Certificate Program has required the establishment of a cooperative network of clinical placements which can also serve as the foundation for the fieldwork component of the Master s program. 5) What units and individuals would be involved in Rutgers University Genetic Counseling Program? Department of Genetics The Department of Genetics encourages and fosters research, dissemination of knowledge and public service aimed at understanding and contributing to advances in the genetics of humans and model organisms. Faculty members conduct cutting-edge research and prepare undergraduate and graduate students for diverse careers in science, medicine and education. The ultimate aim is the betterment of the human condition through progress in genetics research conducted within an ethical framework. Gary A. Heiman, PhD: Assistant Professor, Department of Genetics Linda Brzustowicz, MD: Professor and Chair, Department of Genetics Additional faculty would participate in the teaching of foundational courses Robert Wood Johnson Medical School (RWJMS) 1) Department of Obstetrics and Gynecology, Division of Maternal Fetal Medicine, Section of Perinatal Genetics The Section of Reproductive Genetics provides clinical services to any patient concerned regarding possible fetal genetic disease or birth defects. The genetic counselors provide clinical services in the Clinical Academic Building in New Brunswick and multiple off-sites include Somerset Medical Center, CentraState Medical Center, Brunswick Hills OBGYN, and RWJ at Hamilton. The genetic counselors see over 1000 patients annually. This group currently serves as site coordinator for three different genetic counseling training programs in New York (Sarah Lawrence College, Long Island University) and Pennsylvania (Arcadia University). Role in the program: Serve as a clinical training site in reproductive genetics. Elena Ashkinadze, M.S., CGC, Clinical Instructor, Perinatal Genetic Counseling Supervisor Christy Seymour, M.S., CGC, Genetic Counselor 3
2) Department of Pediatrics, Division of Pediatric Medical Genetics The Division of Pediatric Medical Genetics provides both clinical and biochemical genetics services to children and adults impacted by genetic conditions. This program currently serves as an approved training site for Sarah Lawrence College, Long Island University, and Arcadia University. Location: Child Health Institute of New Jersey, 89 French Street, New Brunswick, NJ 08901 Role in the program: Can serve as a clinical training site in general genetics. Susan Sklower Brooks, M.D, Professor, Clinical Geneticist Christina Armeli Botti, M.S., CGC, Genetic Counselor Jennifer K. Muhammad, M.S, CGC, Genetic Counselor 3) Samuel L. Baily Huntington Disease Center Rutgers-Robert Wood Johnson Medical School Piscataway, NJ Role in the program: Can serve as clinical training site for genetic counseling students. This service focuses on families impacted by Huntington disease. Member: Michael McCormack, Ph.D, FACMG, Director Professor of Pathology and Psychiatry Chairman, Governor's Council for Prevention of Developmental Disabilities Department of Human Services State of New Jersey 4) Cytogenetics Laboratory at RWJMS Role in the program: Can serve as a laboratory training site in cytogenetics for genetic counseling students. Location: One Robert Wood Johnson Place MEB 212, New Brunswick, NJ 08901 Member: Hannah Aviv, PhD, Laboratory Director Associate Professor Department of Pathology & Laboratory Medicine Rutgers Cancer Institute of New Jersey (RCINJ) The Rutgers Cancer Institute of New Jersey is currently the state s only National Cancer Institute designated Comprehensive Cancer Center. The RCINJ Hereditary Oncology Prevention and Evaluation Program at the LIFE Center provides families with cancer risk assessment and counseling for various types of cancer including breast cancer, gastrointestinal cancers, gynecologic cancer, and genitourinary cancers. The genetic counselors see over 500 new patients and 400 return patients annually for consultation. They provide services at RCINJ New Brunswick (primary location), RCINJ-Hamilton, and Princeton Medical Center. This program currently serves as an approved training site for Sarah Lawrence College, Long Island University, and Arcadia University. Hetal Vig, MS, CGC- Supervising Genetic Counselor for Cancer Genetics Sandra Mento, MS, CGC: Cancer Genetic Counselor Stephanie Pachter, MS, CGC: Cancer Genetic Counselor Sarah Nashed, MS, CGC: Cancer Genetic Counselor Graduate School of Applied and Professional Psychology (GSAPP) The Graduate School of Applied and Professional Psychology (GSAPP) provides education and training of graduate students with the goal of developing practitioners to advance the practice and field of professional psychology. Dr. Susan Furrer, the Executive director of the Center for Applied Psychology has agreed to develop a course to train our students in non-directive counseling. 4
6) What are the desired outcomes? The ultimate goal is to develop a fully accredited Master of Genetic Counseling Program, enrolling 10 students per year. With the rapidly evolving field of Human Genetics, this program will attract students from around the country and internationally who will be trained in Genetic Counseling. These students will be eligible for national certification and employment further representing the specialized training they receive at Rutgers University. 7) Anticipated resources to support this initiative Presently, Rutgers already has in place many of the resources needed to launch this initiative. This includes approved clinical rotations in prenatal, pediatric and cancer genetic counseling. The main immediate resources needed would be a) funding for an administrator to help with the accreditation application and work with the executive directors (see proposal initiator listing above) to develop the program and b) an identified office space out of which to administer the program. After launch, the administrator would help process student applications and assist with the day-to-day needs of the program. Once the program is approved, funding would be needed to support a full-time program director and to support faculty effort for teaching courses needed for the program (e.g., Medical Genetics). Additional funding would be needed to buy-out time for co-director(s) from either clinical or teaching responsibilities. A small operating budget would also be required to run the office, advertise the program, and for the director to attend relevant national meetings of genetic counseling programs. While University support would be necessary during the program launch, this would be a professional Masters program of two years in duration, with a proposed class size of 10, so 20 students would be enrolled at any given time. With a favorable tuition split, this program would generate sufficient revenue to be self-supporting. In additional, we anticipate that students from other units would be interested in enrolling in courses such as Medical Genetics, so a share of this additional tuition revenue could also be returned to the program to help cover costs. 8) Proposed Measures to Mark Progress or Determine Success [Please explain, in one or two paragraphs, how progress toward achievement of the initiative will be measured and how overall success will be determined.] The first year of program development should include identifying key faculty (including the Program director and co-director(s)) and courses, establishing appropriate clinical and laboratory student rotations, and obtaining provisional accreditation from the Accreditation Council for Genetic Counseling. The initial enrollment goal is to accept 4 students per year. Upon graduation, these students should be prepared to sit for their certification examination, obtain State licensure and secure a full-time position in Genetic Counseling or a related field. Within 3 years of matriculating the first class, the goal is to complete the required procedures to obtain full accreditation from the Accreditation Council for Genetic Counseling. This includes completing the self-study and undergoing the site visit. A longer term goal will be to grow the program and expand the number of accepted students, with an ultimate enrollment target of 10 students per year. Please save your proposal as a Word document and submit it as an email attachment to NBStratPlanProposals@rutgers.edu by April 15, 2014. 5