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The Johns Hopkins University/National Human Genome Research Institute
Genetic Counseling Training Program

Introduction Introduction
Overview of the Graduate Program Overview of the Graduate Program
Program Description Program Description
Master's Degree Curriculum Master's Degree Curriculum
Clinical Training Opportunities Clinical Training Opportunities
Research Training Research Training
Doctoral Degree Curriculum Doctoral Degree Curriculum
Program Accreditation and Student Certification Program Accreditation and Student Certification
Participating Faculty and Advisors Participating Faculty and Advisors
Executive Committee Members Executive Committee Members
Program Costs Program Costs
Program Logistics Program Logistics
Admissions Admissions
For More Information For More Information

Introduction

The accelerated discovery of disease and susceptibility genes made possible by the sequencing of the human genome has brought new and exciting challenges to the field of genetic counseling. The traditional emphasis on providing information coupled with supportive counseling, primarily for people facing reproductive decisions, has been broadened dramatically in the past few years to address a multiplicity of emerging needs, ranging from those seeking disease susceptibility testing to those wanting to know if a therapeutic treatment option is right for them. Therefore, genetic counselors must not only convey to these individuals and their families information about risks but also the consequences of testing and the potential for therapeutic intervention. These choices are laden with uncertainty and raise difficult ethical, legal and social issues.

As the scope of genetic counseling expands and evolves, more patient, professional, and community education will be imperative. Increasingly, primary care practitioners are providing aspects of genetic counseling and other genetic services, resulting in a need to educate nurses, social workers and physicians. Genetic counselors play a key role in educating these providers and assisting with establishing standards of practice. Trained genetic counselors also provide a link for health professionals and patients to communicate with policy makers, the media and the public about new and emerging genetic technologies and services.

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Overview of the Graduate Program

Drawing on resources from two outstanding research institutions, the National Human Genome Research Institute (NHGRI) at the National Institutes of Health and the Department of Health, Behavior and Society at the Johns Hopkins Bloomberg School of Public Health have collaborated to develop a unique genetic counseling graduate program that addresses the growing need for genetic counseling services. The JHU/NHGRI Genetic Counseling Program was established in 1996, and its goals are to prepare graduates to:

  • Provide genetic counseling, with an emphasis on clients' psychological and educational needs.

  • Conduct social and behavioral research related to genetic counseling.

  • Educate health care providers, policy makers and the public about genetics and related health and social issues.

Since it's inception, the Program has continued to produce a cadre of genetic counselors who are broadening 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.

Johns Hopkins Bloomberg School of Public Health provides a strong academic home for the Program, while NHGRI provides funding, instruction and leadership. This collaborative program, which represents the first allocation of federal funds to support graduate education in genetic counseling, is regarded as one of the most significant efforts to date to address new challenges resulting from the explosion of genome research.

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Program Description

The JHU/NHGRI Genetic Counseling Training Program offers two different tracks of study. 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. This two and one-half year program provides academic preparation beyond that available from most genetic counseling programs and 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 research thesis.

The second track also prepares students for a master of science degree (Sc.M.). However, it also includes an option for continued study toward a doctoral degree (Ph.D.) in the JHU Department of Health, Behavior and Society. This master's degree program parallels that of the first track and qualifies graduates to attain certification from the American Board of Genetic Counseling. Additional coursework along with a doctoral dissertation is required for the doctoral degree. The master's thesis may provide pilot data for the doctoral dissertation. Students enrolled in the second track require at least five years to complete the program. Five students are accepted annually into either of the two tracks.

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Master's Degree Curriculum

The curriculum for the master's degree consists of at least 80 credit hours of didactic coursework in the areas of genetic counseling, human genetics, public policy, research methodology, bioethics and health communication. An overview of the required coursework is provided below.

Counseling and Genetic Counseling Courses

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 psychotherapeutic theories to genetic counseling.

Facilitating Family Adaptation to Loss and Disability 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.

Human Genetics Courses

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.

Communication in Health Care Delivery

Communications Strategies for the Health Education and Health Promotion at JHU presents various communication strategies used internationally and domestically in health education and health promotion programs at the community level.

BioEthics and Public Policy

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.

Research Methodology

Public Health Perspectives on Research taught at JHU introduces the substantive and methodologic basis for public health research presenting human health throughout the life span; the major causes of morbidity and mortality; and strategies for health interventions in each stage of life.

Statistical Methods in Public Health; 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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Clinical Training Opportunities

Because training for a career in genetic counseling requires meaningful interaction with clients in a variety of clinical settings, students in the Program have access to more than twenty-five adult, pediatric, prenatal and specialty genetic clinical training sites in the Baltimore-Washington area. 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. In addition, there are a variety of training opportunities at the NIH Clinical Research Center linked to investigations into the cause and clinical history of genetic conditions and behavioral issues surrounding the use of genetic testing. Also, students are exposed to cutting-edge molecular genetics research at NHGRI, providing them a rich training experience. Finally, students have community-based experiences through unique resources located in the Baltimore-Washington area, such as the Genetic Alliance, an umbrella organization representing hundreds of genetic support and advocacy groups.

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, their impact on individuals and their families, and the role of the professional genetic counselor.

Most of the preceptors for clinical rotations are board-certified genetic counselors. Those who are not (e.g., medical social workers, health educators, physicians, etc) enhance the students' clinical training by exposing them to a variety of disciplines. The American Board of Genetic Counseling endorses this type of broad experience. The Program provides biannual meetings, and annual 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 own progress. The scheduling of rotations ensures a broad range of experiences, taking into account class and clinic schedules.

Program faculty provide one-on-one supervision for an hour each week throughout graduate training period. These sessions offer students feedback based on audiotaped sessions with clients and on interventions consistent with development of counseling expertise.

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Research Training

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 who are 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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Doctoral Degree Curriculum

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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Program Accreditation and Student Certification

The American Board of Genetic Counseling has published guidelines for basic training of genetic counselors that recommend specific 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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Participating Faculty and Advisors

The National Human Genome Research Institute (NHGRI) at the NIH and the Johns Hopkins University (JHU) Bloomberg School of Public Health 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, M.S., an Associate Investigator in the NHGRI Social and Behavioral Research Branch. Debra Roter, PhD, Academic Director in the Department of Health, Behavior and Society at JHU provides instruction, faculty advising and research oversight. Robert Nussbaum, Chief of the Genetic Disease Research Branch, NHGRI, serves as Medical Director of the Program, and Holley Peay, NHGRI, serves as Associate Director of the Program. JHU's Mary Ann Dunevant serves as Program Coordinator. Students are assigned to a faculty advisor from either the NHGRI or JHU. 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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Executive Committee Members

Barbara Bowles Biesecker, M.S., CGC
Associate Investigator, Social and Behavioral Research Branch
National Human Genome Research Institute, NIH
Research Interests: Genetic counseling interventions, assessing and meeting the needs of genetic counseling clients.

Ada Hamosh, M.D., MPH
Associate Professor, Department of Pediatrics and Institute of Genetic Medicine
Associate Professor, Department of Epidemiology
Johns Hopkins School of Medicine, Bloomberg School of Public Heath
Research Interests: genotype-phenotype correlations and modifier genes in cystic fibrosis, nonketotic hyperglycinemia and clinical implications of the sequencing of the human genome.

Trish Magyari, M.S., CGC
Genetic Counselor, Social and Behavioral Research Branch
National Human Genome Research Institute, NIH
Research Interests: Grief, coping, adaptation and cognitive-behavioral and mind-body interventions

Colleen McBride, Ph.D.
Chief, Social and Behavioral Research Branch
National Human Genome Research Institute, NIH
Research Interests: Genetic risk communication related to common disease and its effects on behavior change, using genomic discoveries to reduce health disparities, and developing genomic-based interventions for public health dissemination.

Rajiv Rimal, Ph.D.
Assistant Professor, Department of Health, Behavior and Society
Johns Hopkins Bloomberg School of Public Health
Research Interests: Health communication, risk perception, behavior change, interventions and social norms.

Debra Roter, Dr.PH.
Professor, Department of Health, Behavior and Society
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.

Joan Scott, M.S., CGC
Deputy Director, Genetics and Health Policy Center
Washington DC
Research Interests Policy implications of advances in genetics.

Lawrence S. Wissow, M.D., M.P.H.
Associate Professor, Department of Health, Behavior and Society
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.

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Program Costs

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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Program Logistics

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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Admissions

The JHU/NHGRI Program supports diversification of the genetic counseling profession, leading to a richer professional dialogue and enhancing genetic counseling for minority communities. Therefore, 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, including people with disabilities, men, and people from ethnic and racial minorities.

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.
  • 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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For More Information

You can find more information at:

Master of Science in Genetic Counseling [jhsph.edu]
Also provides an on-line application.

The Admissions Office

If you have questions about the application procedure itself, these should be directed to 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

Program Director

Specific inquiries regarding the Program should be addressed to the Director:

Barbara Bowles Biesecker, M.S.
Phone: (301) 496-3979
E-mail: barbarab@mail.nih.gov

Or to the Program Coordinator:

Mary Ann Dunevant
Phone: (410) 955-2315
E-mail: mdunevan@jhsph.edu

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Last Reviewed: July 17, 2008




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