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The Johns Hopkins University/National Human Genome Research Institute
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Introduction |
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Justification for the Graduate Program |
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Program Description |
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Curriculum |
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Clinical Training Opportunities |
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Research Training |
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Doctoral Degree Requirements |
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Program Accreditation and Student Certification |
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Participating Faculty and Advisors |
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Executive Committee Members |
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Program Costs |
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Program Logistics |
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Admissions |
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For More Information |
The accelerated discovery of disease and susceptibility genes made possible by the Human Genome Project (HGP) has brought new and exciting challenges to the field of genetic counseling. The traditional emphasis on the provision of information coupled with supportive counseling, primarily for people facing reproductive decisions, has been broadened to address the needs of those seeking susceptibility testing for a growing number of health conditions. Genetic counselors must not only convey to these individuals and their families risks and options, including reproductive choices, but also the consequences of testing and the 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 process of genetic counseling.
As the scope of genetic counseling expands and evolves, more patient and community education will be imperative. Increasingly, primary care practitioners will provide aspects of genetic counseling and other genetic services, resulting in a need to educate nurses, social workers and physicians. Genetic counselors are key professionals in educating these providers and assisting with establishing standards of practice. Trained genetic counselors will also provide a link to communication with policy makers, the media and the public about new and emerging genetic technologies and services.
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The National Human Genome Research Institute (NHGRI) Office of the Clinical Director (OCD) at the National Institutes of Health (NIH), and the Department of Health Policy and Management of the Johns Hopkins Bloomberg School of Public Health, collaborate to provide a unique genetic counseling graduate program that addresses needs in the field, drawing on resources from two outstanding research institutions. This program was initiated in 1996 and its goals are to prepare graduates well to:
The program will produce a cadre of genetic counselors who will broaden the scope of genetic counseling by contributing to a growing research literature that critically examines a variety of aspects of the profession to shape future directions in the field.
According to the National Society of Genetic Counselors (NSGC), there are currently 27 master's level, genetic counseling training programs in the United States. These programs are generally in schools of medicine, nursing, and arts and sciences, with a few housed in schools of public health, which emphasize policy and research methodology. Johns Hopkins Bloomberg School of Public Health provides a strong academic home for the JHU/NHGRI Genetic Counseling Program to meet its stated objectives. Funding, instruction and directorship support from the NHGRI 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 resulting from genome research.
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The JHU/NHGRI Genetic Counseling Program offers two different tracks of study. Four students are accepted into the program annually, in either of the two tracks.
The first track prepares students for a master of science degree (Sc.M.) in genetic counseling from the Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health. The two and one-half year master's degree program provides academic preparation beyond that available from most genetic counseling programs. The program is based on coursework taken at the NIH and Johns Hopkins, a minimum of four hundred contact hours of supervised clinical rotations in a variety of settings, and completion of an original thesis project at the level of the master's degree.
The second track also prepares students for a master of science degree (Sc.M.) but with an option for continued study toward a doctoral degree (Ph.D.) in the Department of Health Policy and Management, after completion of the Sc.M. degree. The master's degree program parallels that of the first track, qualifying graduates to be eligible for certification from the American Board of Genetic Counseling. The doctoral degree requires additional coursework and a doctoral dissertation. The master's thesis may provide pilot data for the doctoral dissertation. It is expected that students enrolled in the second track will require at least five years to complete the program.
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The curriculum for the master's degree 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.
Genetic Counseling Practice 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, ethical guidelines for professional conduct and research needs.
Practicum in Genetic Counseling at NIH teaches the basic tools for genetic counseling and outlines professional roles in pediatric, prenatal, adult and research genetics clinic settings.
Theory of Counseling at JHU exposes students to the constructs, principles and techniques of the major counseling theories.
Genetic Counseling Seminar at the Foundation for Advanced Education in the Sciences (FAES) at NIH hosts a wide variety of professionals and clients who teach about services, research, policies, resources and experiences relevant to genetic counseling.
Therapeutic Genetic Counseling at NIH provides experiential and didactic instruction to foster students' development of their own genetic counseling practice theory. Components of the counseling relationship are developed along with the application of various theories of psychotherapy to genetic counseling.
Facilitating Bereavement at NIH teaches grief issues most relevant to genetic counseling, exploring issues for parents and providers in prenatal and perinatal loss. Loss related to the death and dying of older affected family members, chronic illness and disability is also explored.
Advanced Genetic Counseling at NIH uses role-play and literature to address educational, counseling and research issues integral to the client relationship within different settings including: prenatal, pediatric, adult, specialty, diagnostic lab, psychiatric and oncology.
Introduction to Human Genetics at NIH teaches patterns of inheritance, cytogenetics, variation and mutation, population genetics, molecular medicine, gene mapping, risk assessment, complex traits, cancer genetics, screening and treatment.
Introduction to Medical Genetics at FAES at the NIH reviews teratology, clinical features and natural history of genetic disorders by specific organ systems, and gene therapy.
Developmental Biology and Human Malformations at FAES at the NIH teaches developmental biology using model systems to illustrate human malformations.
Current Topics in Clinical Molecular Genetics and Molecular Diagnostics at FAES at the NIH illustrates state-of-the-art techniques in DNA-based diagnosis by reviewing a number of genetic conditions.
Interpersonal Influence in Medical Care at JHU provides theoretical and methodological frameworks for understanding, assessing and evaluating interpersonal communication with clients.
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 examines both the scientific basis and the policy implications of several new genetic tests that affect the public.
Ethical and Sociocultural Implications of Genetic and Reproductive Technologies at JHU teaches students to conceptualize and evaluate the ethical and behavioral aspects of genetic services.
Biostatistics; Principles of Epidemiology; and Research Design in the Social and Behavioral Sciences, all at JHU, prepare students to conduct research and to critically evaluate research studies.
Thesis Proposal Development at JHU 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 ethnographic methods including interviewing, focus groups, direct observation, and the management, coding and analysis of qualitative data.
Special Studies and Research at JHU provides the forum for students to conduct their research, process the data and report their findings.
Journal Club provides the opportunity to critique and discuss a classic genetic counseling research paper alongside a contemporary application. A bimonthly journal club is held in the evening in faculty homes.
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Training for a career in genetic counseling requires meaningful interaction with clients in a variety of clinical settings. More than twenty-five adult, pediatric, prenatal and specialty genetic centers in the Baltimore-Washington area serve as clinical training sites for the program's students. For example, two specialty services at Johns Hopkins - the Breast and Ovarian Surveillance Service that provides care to women at increased risk for inherited cancer, and the Huntington's disease Presymptomatic Testing Program - provide stimulating training opportunities. At the NIH Clinical Center, there are a variety of training opportunities linked to investigations into the cause and clinical history of genetic conditions and behavioral issues surrounding the use of genetic testing. Also, exposure to cutting-edge molecular genetics research at NHGRI provides a rich training experience. Finally, students have community-based experiences through unique resources located in the Baltimore-Washington area, such as the Genetic Alliance and the genetic counseling services at Gallaudet College, a school for the deaf.
Clinical rotations begin in the second quarter of the program and are required throughout. Students may take additional clinical rotations as electives during the school year or during the summers. 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. Preceptors model counseling skills and students have the opportunity to develop their own skills. Students also learn the administrative aspects of counseling services and the use of referral resources. They are introduced to the breadth of services and the variety of counselor responsibilities, which helps them 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, or physicians) enhance 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 provides biannual meetings, and annual training in supervision and evaluation for the preceptors. The preceptors evaluate each students performance and students are asked to do a self-evaluation of their own progress. The scheduling of rotations ensures a broad range of experiences, taking into account class and clinic schedules.
An important aspect of clinical training is professional development as short-term therapeutic counselors. One-on-one supervision with program faculty is provided for an hour each week throughout graduate training. The sessions offer students faculty feedback on client needs based on audiotapes of sessions and on interventions consistent with development of counseling expertise.
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One of the major goals of the program is to train students to conduct social, behavioral and policy research in the field of genetic counseling. Important research questions include: the effectiveness of various genetic counseling techniques; essential aspects of genetic counseling in the screening of 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; decision-making dynamics including the role and value of non-directiveness; public attitudes toward, and media presentation of, new genetic technologies and related ethical, medical and service delivery issues; policy issues regarding the provision and funding of genetic services; and social and policy research related to the elimination of disparities in access of genetic services to minority and traditionally under-served populations.
To begin to answer such questions, researchers with expertise in both genetic counseling and social science 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 the training and experience to develop, conduct and report on research. In addition, a thesis project is required. Financial and technical assistance to carry out the thesis project is available to students.
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The curriculum for the doctoral degree focuses on the application of principles from educational, behavioral, social and psychological theory to influence health practices and behaviors conducive to optimal health of individuals, groups and communities. The curriculum emphasizes needs assessment, planning, implementation and evaluation of comprehensive health programs. Specific intervention strategies covered include individual behavior change strategies based on learning theory; use of mass media communication; interpersonal communication; social support; advocacy; and community organizing. Interventions are directed at patients and clients; health care professionals; administrators; legislators; the general public; or combinations of the above.
Doctoral students are required to take the departmental core courses. In addition there are required doctoral courses and recommended courses as specified by the student's advisor. At the end of the first year, students are required to sit for the written qualifying exams, covering material from the first-year required doctoral courses. In the second year, students continue courses and seminars in preparation of their research thesis protocol. Presentation of the thesis proposal in an oral exam marks the students' readiness to begin research. Upon passing this preliminary oral the student will be ready to pursue their research topic and prepare a written dissertation. Final approval of the dissertation is based upon its acceptability to the student's advisor and a committee of faculty on the final oral exam.
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The American Board of Genetic Counseling has published minimal guidelines for training genetic counselors that recommend program curricula including 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 fully accredited by the American Board of Genetic Counseling. Graduates are eligible to sit for their Board examinations after completion of the degree program and 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 during their training and are supervised by board-certified genetic counselors in most of their rotations, as stipulated by the ABGC. The State of Maryland Board of Higher Education also sanctions the JHU/NHGRI Program.
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The National Human Genome Research Institute (NHGRI) at the NIH and the Johns Hopkins Schools of Public Health and Medicine provide the leadership for this joint program. Financial support for the Program comes from the NHGRI. The genetic counseling coursework, student supervision, coordination of clinical rotations, and ABGC accreditation are overseen by Director, Barbara Bowles Biesecker in the Office of the Clinical Director in the NHGRI. Debra Roter, Academic Director in the Department of Health Policy and Management in the Johns Hopkins School of Public Health, provides academic direction, faculty advising and research oversight. Robert Nussbaum, Chief of the Laboratory of Genetic Disease Research, NHGRI, serves as Medical Director of the Program and Aideen McInerney, Research Associate, NHGRI, serves as Assistant Director of the Program. Mary Ann Dunevant serves as Program Coordinator. Students are assigned to a faculty advisor from either the NIH or Johns Hopkins. These advisors (listed below) monitor students' progress, advise them on coursework and clinical rotations, and assist in selecting a thesis committee.
The Program Executive Committee meets at least quarterly to monitor the Program and students' progress. Members of the Committee also constitute the Admissions Committee and serve as thesis advisors.
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Barbara Bernhardt, M.S., CGC
Associate Professor of Pediatrics and Oncology
Johns Hopkins Schools of Medicine and Public Health
Research Interests: Evaluation of genetic counseling; issues in delivery and reimbursement of services.
Barbara Bowles Biesecker, M.S., CGC
Associate Investigator, Medical Genetics Branch
National Human Genome Research Institute, NIH
Research Interests: genetic counseling; impact of living with genetic conditions.
Gail Geller, Sc.D.
Associate Professor of Pediatrics
Johns Hopkins Schools of Medicine and Public Health
Research Interests: Informed consent; ethical issues; provider directiveness; uncertainty; qualitative research methods.
Alan Guttmacher, M.D.
Senior Clinical Advisor to the Director
National Human Genome Research Institute, NIH
Research Interests: Genetics education; community of the models for the dissemination of clinical genetics; dysmorphology; genetics and public policy
Ada Hamosh, M.D.
School of Medicine, Institute of Genetic Medicine
The Johns Hopkins Hospital, Dept of Pediatrics
Trish Magyari, M.S., CGC
Genetic Counselor, Office of the Clinical Director
National Human Genome Research Institute, NIH
Research Interests: Grief, coping, adaptation; cognitive-behavioral, mind-body and decision-making interventions.
Robert L. Nussbaum, M.D.
Chief, Laboratory of Genetic Disease Research
National Human Genome Research Institute, NIH
Research Interests: Correlation of molecular data to medical diagnosis and interpretation for genetic counseling.
Debra Roter, Dr.PH
Professor, Health Policy and Management
Johns Hopkins Bloomberg School of Public Health
Research Interests: Analysis of patient-provider communication; health education and health promotion; provider education and CME; materials development for low literate audiences.
Lawrence S. Wissow, M.D., M.P.H
Associate Professor, Health Policy and Management
Johns Hopkins Bloomberg School of Public Health
Research Interests: Patient-provider communication related to sensitive psychosocial issues; cultural and developmental differences in disclosure; provider education.
Benjamin Wilfond, M.D
Associate Investigator, Medical Genetics Branch
National Human Genome Research Institute, NIH
Research Interests: Ethical issues related to genetic research and clinical genetics.
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The collaborative nature of the Program leads to reduced tuition to Johns Hopkins Bloomberg School of Public Health through scholarships to students in good academic standing. Stipends are also available to students from NHGRI along with financially-based scholarships. No part-time students are admitted to the Program due to the complexity of scheduling courses and clinical rotations between the separate campuses.
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The coursework for the Program is offered on the NIH campus in Bethesda, Maryland, and at the medical and undergraduate campuses of Johns Hopkins University in Baltimore. The curriculum minimizes students having to be at different geographic locations on the same day, but travel between Bethesda and Baltimore is required during each week. Clinical rotations are held in both the greater Baltimore and Washington, D.C., metro areas. Car travel is essential to manage the Program, although students often carpool.
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Candidates from a wide variety of backgrounds and experiences are welcomed. We especially encourage candidates from groups currently under-represented in the genetic counseling profession: persons with disabilities, men, and persons from ethnic and racial minorities. The JHU/NHGRI Program supports diversification of the genetic counseling profession, leading to a richer professional dialogue and enhancing genetic counseling for minority communities.
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-aware 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 15th. Applications received after that date cannot be guaranteed a review.
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To receive an application, please contact:
On-line Application Information [jhsph.edu]
The Admissions Office
Bloomberg School of Public Health
The Johns Hopkins University
615 North Wolfe Street
Baltimore, MD 21205
Phone: (410) 955-3543
Fax: (410) 955-0464
E-mail: admiss@jhsph.edu
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 the Director:
Barbara Bowles Biesecker, M.S.
Phone: (301) 496-3979
E-mail: barbarab@nhgri.nih.gov
Or to the Program Coordinator:
Mary Ann Dunevant
Phone: (410) 955-2315
E-mail: mdunevan@jhsph.edu
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Last Updated: August 2004
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