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The Johns Hopkins University / National Human Genome Research Institute Genetic Counseling Graduate ProgramTable of Contents
Since its inception, genetic counseling has focused on the provision of information coupled with supportive counseling, primarily for persons making reproductive decisions. However, with the accelerated discovery of disease and susceptibility genes made possible by the Human Genome Project, the field of genetic counseling has become increasingly challenging. Now, not only must families who have already experienced a genetic condition be counseled, but those who have never had close contact with genetic conditions will more often seek and be offered screening. Genetic counselors must not only convey risks and options, including reproductive choices, but also the consequences of testing and potential therapeutic interventions. These choices are laden with uncertainty and raise difficult ethical, legal, and social issues. With expansion of genetic services, new issues emerge in how counseling should be conducted. Yet, there has been little research on the effectiveness, impact or methodology of genetic counseling. With burgeoning amounts of genetic research, particularly emerging molecular understandings and their application to clinical medicine, the curricula of existing graduate programs have been overburdened. Less time has been available for education in psychotherapeutic counseling strategies and evaluation. This has not adequately prepared genetic counselors to address the complex emotional, social, and familial ramifications of genetic conditions, testing options and screening. Further, genetic counselors are infrequently trained in research methodology or in acquiring academic skills to be effective health educators. As the scope of genetic counseling expands and evolves, more patient and community education will be imperative. Aspects of genetic counseling and other genetic services will increasingly be provided by primary care practitioners, resulting in a need to educate nurses, social workers and physicians. Genetic counselors are key professionals to educate these providers and to assist in the establishment of standards of practice. Trained genetic counselors will also provide a link in communicating with policy makers, the media and the public at large about new and emerging genetic technologies and services. The National Human Genome Research Institute (NHGRI) Office of the Clinical Director (OCD) of the National Institutes of Health (NIH), and the Department of Health Policy and Management of the Johns Hopkins School Hygiene and Public Health are collaborating to provide a unique genetic counseling graduate program. This collaboration brings together resources from the two institutions to address needs in the field. This program was initiated in 1996 and its goals are to prepare graduates to:
The impetus for the development of this program was the need for counselors more adequately prepared to conduct psychotherapy for concerns related to genetic conditions, the need for genetic counseling researchers, and the need for training in health education. The program will produce a cadre of genetic counselors who will broaden the scope of genetic counseling by generating a research literature that critically examines a variety of aspects of the profession. This academic endeavor will shape future directions in the field. According to the National Society of Genetic Counselors (NSGC), there are currently twenty-five master's level genetic counseling training programs in the United States. These programs are generally in Schools of Medicine, Nursing Schools, and in Arts and Sciences, with few housed in a school of public health with its population and policy perspective, and its strength in research methodology. Johns Hopkins School of Hygiene and Public Health provides a strong academic home for the JHU/NHGRI Genetic Counseling Program to meet its stated objectives. Funding and directorship support from the National Human Genome Research Institute represent the first allocation of Federal funds to support graduate education in genetic counseling. This program is regarded as an important effort to address new challenges in the field of genetic counseling due to genome research. The two and one-half year master's degree program provides academic preparation beyond that currently available through existing genetic counseling programs, as outlined above. Training leads to an ScM degree in genetic counseling from the Johns Hopkins School of Hygiene and Public Health's Department of Health Policy and Management. The program is based on coursework taken at the NIH and Johns Hopkins, as outlined below. In addition to didactic coursework, the program requires a minimum of four hundred contact hours of supervised clinical rotations in a variety of settings, and completion of a thesis project. Four students will be accepted into the program annually. Curriculum and course requirements The curriculum consists of at least 80 credit hours of didactic coursework in the areas of human genetics, genetic counseling, public policy, research methodology, ethics and health communication. A wide range of elective courses are available and may be taken according to student interests. Counseling and Genetic Counseling Courses Genetic Counseling Practice taught at NIH teaches the history and goals of the profession, the scope of practice, values inherent in the relationship with clients, non-directiveness, practice standards, research needs and basic skills in obtaining history information and making counseling assessments. Practicum in Genetic Counseling teaches the basic tools and skills of a genetic counselor as well as the more specific knowledge needed in pediatric, prenatal, and adult genetics card. It also examines the administrative aspects of genetic counseling in relation to the health care system. Genetic Counseling Seminar held weekly within the Foundation for Advanced Education in the Sciences (FAES) at NIH throughout each quarter of the program uses case discussions to highlight the psychological, social and ethical issues in genetic counseling; reviews recent literature relevant to the field; and hosts a wide variety of professionals and clients who share with students services, research, and expertise relevant to genetic counselors. Genetic Counseling as Psychotherapy taught at NIH is both experiential and didactic and emphasizes development of a counseling theory and its application. Components of the counseling relationship (building and acting on the relationship, implementation, and summarization) are sequentially introduced through didactic presentation coupled with role-playing. Various psychotherapeutic theories are modeled in their application to genetic counseling. Advanced Genetic Counseling taught at NIH is a literature driven course addressing educational, counseling and research issues inherent in the client relationship in a wide variety of genetic counseling settings including: prenatal, pediatric, adult, disease specific, bio-technology, teratology, psychiatric and oncology. Use of case examples and role-playing helps to ensure understanding in the application of these concepts. Bereavement in Maternal and Child Health taught within FAES is a course focused on the grief issues most relevant to genetic counseling. It explores issues for parents in prenatal and perinatal loss. It also touches on death and dying of older affected family members. Introduction to Counseling taught through the JHU School of Continuing Studies is designed for graduate work in psychological counseling and provides theoretical and practical overviews of essential issues in professional counseling. Introduction to Medical Genetics, a year long course offered through FAES, provides instruction in cytogenetics, patterns of inheritance, biochemical genetics, molecular genetics, population and quantitative genetics, human variation and disease susceptibility, teratology, clinical features and natural history of genetic disorders, and indications for and methods of genetic diagnosis. Knowledge of these areas prepares students to understand human genetics to a degree needed to provide both client and professional education. This course covers most of the required content areas as proposed by the American Board of Genetic Counseling (ABGC). Current Topics in Clinical Genetics taught within FAES is based on student review of current research papers on specific genetic conditions. Students are asked to critically assess the research results and present their application to clinical medicine and genetic counseling. Topics include: inborn errors of metabolism, approaches to the dysmorphic child, chromosome abnormalities, approaches to short stature, connective tissue disorders, neuromuscular disorders, overgrowth syndromes, Phacomatoses, and common genetic conditions such as diabetes, cancer, psychiatric disorders, and renal disease. Current Topics in Molecular Genetics taught within FAES follows in a similar format, focusing on emerging research in the field of molecular genetics and its relevance to genetic counseling. Communication in Health Care Delivery Interpersonal Influence in Medical Care taught in the JHU School of Hygiene and Public Health provides a framework for developing and assessing communication with clients, skills that are honed in clinical rotations. Fundamentals of Health Education and Health Promotion at JHU prepares students to plan and execute educational programs for health care providers and consumers. Introduction to Health Policy and Management at JHU provides a broad perspective on the historical, political and economic aspects of health policy development. Research Ethics and Integrity at JHU familiarizes students with ethical, legal and social implications of research. New Genetic Technologies and Public Policy taught at JHU focuses on the diffusion of genetic technologies and the development of policy relating to their use. Ethical and Social Issues in Developing and Evaluating Genetic Services at JHU teaches students to conceptualize and evaluate the ethical and behavioral aspects of providing genetic services. Biostatistics, Principles of Epidemiology, Research Design in the Social and Behavioral Sciences, all taught at the JHU, prepare students to conduct research and to critically evaluate research studies. Thesis Proposal Development prepares students in the development of their thesis proposal by clarifying a research idea, discussing methodology and feasibility, and producing a first draft. Students also provide feedback on their peers' thesis proposals. Qualitative Research Methods at JHU provides hands-on experience in a variety of qualitative approaches. Journal Club provides the opoortunity to critique and discuss a classic genetic counseling research paper alongside a contemporary application. Monthly journal club is held in the evening in the homes of the Executive Committee faculty. Special Studies and Research at JHU assists students in the development of a research proposal and provides them with an opportunity to conduct their research, process the data and report their findings. Clinical Training Opportunities Training for a career in genetic counseling requires meaningful interaction with clients in a variety of clinical settings. More than twenty-five adult, pediatric and prenatal genetic centers in the Baltimore-Washington area serve as clinical training sites for the program's students. This includes a variety of specialty clinics currently providing care to persons with genetic conditions. For example, two specialty services at Johns Hopkins, the Breast/Ovarian Surveillance Service that provides care to women at increased risk for inherited cancer, and the Huntington Disease Presymptomatic Testing Program provide challenging counseling opportunities. Within the Clinical Center at the NIH, there are a variety of clinical experiences related to investigations into the cause and clinical history of a variety of genetic conditions, and psychological issues surrounding genetic testing for hereditary breast and ovarian cancer and hereditary non-polyposis colon cancer. Also, exposure to cutting-edge molecular genetics research at NHGRI provides a rich training experience. Finally, unique resources located in the Baltimore-Washington area, such as the Alliance of Genetic Support Groups and the genetic counseling service at Gallaudet College (a school for the deaf), provide students with community-based experiences. Clinical rotations begin in the second quarter of the program, and are required throughout. They are scheduled during several half-days each week. As well, students may enroll for additional clinical rotations as electives during the school year or during the summer. These rotations provide a critical opportunity for students to learn directly about genetic conditions and their impact on individuals and their families, as well as about roles of the professional counselor. Counseling skills are modeled by the preceptors, and students have the opportunity to practice their counseling strategies. Administrative aspects of counseling services, often not taught in the classroom, and use of referral resources are also learned. These experiences in a variety of clinical settings introduce students to the breadth of services and variety of counselor responsibilities. This helps the students establish their expectations and desires for future employment. Most of the preceptors for clinical rotations are board-certified genetic counselors. Those who are not (medical social workers, health educators, physicians) enhance the clinical training by exposing students to a variety of disciplines. This type of broad experience is endorsed by the American Board of Genetic Counseling. The program directors provide periodic training in supervision and evaluation for the preceptors. The preceptors evaluate each student's performance and students are asked to do a self-evaluation of their progress. The scheduling of rotations is arranged by the directors to ensure a broad range of experiences (e.g., pediatric, adult and prenatal), taking into account class and clinic schedules. An important aspect of clinical training is professional development as short-term psychotherapeutic counselors. One-on-one supervision with one of the program directors is provided for an hour each week during graduate training. The sessions are student led and focus on responses to clients as they relate to student development of therapeutic expertise. One of the major goals of this program is to train students to conduct research in the field of genetic counseling. To date, research has not adequately assessed genetic counseling issues as they affect individuals and families with, or at risk for, genetic conditions. Some unaddressed questions include: the effectiveness of various genetic counseling techniques; essential aspects of genetic counseling for screening populations; the impact of counseling on clients' personal relationships, marital satisfaction, and family stability; multicultural counseling approaches; efficacy of genetic counseling provided by primary care providers; and the notion of nondirectiveness. To begin to answer such questions, researchers with expertise in both genetic counseling and research methodology are needed. This program offers a faculty with diverse backgrounds and expertise, experienced in addressing the types of research questions that are now being asked in the field of genetic counseling. Throughout the program, students take courses to provide them with training and experience to develop, carry out and report on research. In addition, a thesis project is required. Financial and technical assistance to carry out the projects are available to students. PROGRAM AND STUDENT CERTIFICATION The National Society of Genetic Counselors has published minimal guidelines for training genetic counselors that recommend program curricula include didactic coursework in medical genetics, practical and theoretical counseling, and behavioral sciences. Four hundred hours of supervised clinical placement in a minimum of two settings are also recommended in an effort to obtain sufficient experience with a variety of cases and to develop competency in clinical skills. The JHU/NHGRI program is accredited by The American Board of Genetic Counseling (ABGC) for "New Program Status." Application for full accreditation is planned for 2002. Graduates of programs holding new program status are eligible to sit for their genetic counseling board examinations after completion of the degree program and completion of a logbook demonstrating significant involvement in the evaluation and counseling of at least 50 different patients and/or families seen for genetic counseling in recognized sites. Students in the JHU/NHGRI Genetic Counseling Program have an opportunity to be involved with well over the required 50 families in the course of their clinical rotations, and are supervised by board-certified genetic counselors in most of their rotations, as stipulated by the ABGC. The JHU/NHGRI program is also approved by the State of Maryland Board of Higher Education. PARTICIPATING FACULTY AND ADVISING The leadership for this joint program is provided by the National Human Genome Research Institute (NHGRI) at the NIH and by the Johns Hopkins Schools of Medicine and Hygiene and Public Health. Financial support for the program comes from NHGRI. The genetic counseling coursework, student supervision, coordination of clinical rotations, ABGC certification are overseen by Co-director, Barbara Bowles Biesecker in the Medical Genetics Branch of NHGRI. Barbara Bernhardt, Co-Director, also a board-certified genetic counselor and on the faculty in the Johns Hopkins Schools of Medicine and Hygiene and Public Health, provides academic direction and research supervision to students. Students are assigned to two academic advisors, one from the NIH and one from Johns Hopkins. These advisors monitor students' progress, advise them on coursework and clinical rotations, and assist in selecting a thesis advisor. The Program Executive Committee meets quarterly to monitor the program and students' progress. Members of the group also constitute the Admissions Committee and serve as thesis advisors. The collaborative nature of the program leads to reduced tuition to Johns Hopkins University School of Hygiene and Public Health. Financial aid is made available to students through the NHGRI. No part-time students are currently admitted to the program due to the complexity of scheduling courses and clinical rotations between the separate campuses. The coursework for the program is offered at FAES on the NIH campus in Bethesda, Maryland, and at the health and undergraduate campuses of Johns Hopkins University in Baltimore. The curriculum minimizes students having to be at different geographic locations on the same day. Clinical rotations are held in both the greater Baltimore and Washington DC metro areas. Car travel is almost essential to manage the program. The admissions requirements for the program are; completion of the General Aptitude Test of the GRE, completion of undergraduate level courses in biochemistry and genetics, and counseling experience, either paid or voluntary. In addition, prior coursework in statistics is strongly recommended. Although an applicant's potential to become a skilled, compassionate, and self-award counselor is an absolute criterion for admission, the greatest consideration will be given to applicants whom we consider best able to advance the profession of genetic counseling through their leadership in research and their interface with the fields of public health, public policy and health education. The application deadline is January 15. Applications received after that date cannot be guaranteed a review. To receive an application,
please contact: If you have questions about the application procedure itself, these should be directed to the Admissions office. Specific inquiries regarding the program should be addressed to one of the directors: Barbara Bowles Biesecker,
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