The Johns Hopkins University/National Human Genome Research Institute
Genetic Counseling Training Program
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.
Top of page
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.
Top of page
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.
Top of page
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.
Top of page
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.
Top of page
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.
Top of page
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.
Top of page
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.
Top of page
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 the Director, Barbara Bowles Biesecker, M.S., an Associate Investigator in the NHGRI Social and Behavioral Research Branch. Debra Roter, Dr. P.H., M.P.H., Academic Director in the Department of Health, Behavior and Society at JHU provides instruction, faculty advising and research oversight. Ellen Sidransky, M.D., Senior Investigator, Medical Genetics Branch, NHGRI, serves as Medical Director of the Program, and Anne Madeo, M.S., NHGRI, serves as Associate Director of the Program. Program coordination is provided by Mary Ann Dunevant and Kathryn Foisie at JHU and NIH, respectively. 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.
Top of page
Executive Committee Members
Barbara Bowles Biesecker, M.S., C.G.C.
Associate Investigator, Social and Behavioral Research Branch
National Human Genome Research Institute, NIH
Leslie Biesecker, M.D.
Chief & Senior Investigator, Genetic Disease Research Branch
National Human Genome Research Institute, NIH
Lori Hamby Erby, Sc.M., Ph.D., C.G.C.
Assistant Scientist, Department of Health, Behavior and Society
Johns Hopkins Bloomberg School of Public Health
Kimberly Kaphingst, Sc.D.
Investigator, Social and Behavioral Research Branch
National Human Genome Research Institute, NIH
Donna Krasnewich, M.D., Ph.D.
National Institute of General Medical Sciences, NIH
Howard Levy, M.D., Ph.D.
Assistant Professor, Department of Medicine
Johns Hopkins University
Anne C. Madeo, M.S., C.G.C.
Genetic Counselor, Social and Behavioral Research Branch
National Human Genome Research Institute, NIH
Trish Magyari, M.S., C.G.C.
Genetic Counselor
Private Practice
Holly Peay, M.S., C.G.C.
Project Director
National Coalition for Health Professionals Education in Genetics
Rajiv Rimal, Ph.D.
Assistant Professor, Department of Health, Behavior and Society
Johns Hopkins Bloomberg School of Public Health
Debra Roter, Dr.PH.
Professor, Department of Health, Behavior and Society
Johns Hopkins Bloomberg School of Public Health
Joan Scott, M.S., C.G.C.
Deputy Director, Genetics and Health Policy Center
Washington D.C.
Ellen Sidransky, M.D.
Senior Investigator, Medical Genetics Branch
National Human Genome Research Institute, NIH
Top of page
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.
Financial and technical assistance is provided to students working on their thesis projects, in part, through project funding received by Barbara Bowles Biesecker, M.S., program director of the JHU/NHGRI Genetic Counseling Training Program and associate investigator of the NHGRI Social and Behavioral Research Branch. See: Barbara Biesecker's Z01 Projects
Within the project funding chart, "Cost" does not reflect the amounts used to financially support JHU/NHGRI Genetic Counseling Training Program student's thesis projects. It is total program costs, including direct and indirect costs, used to support research projects that are pursued by Barbara Biesecker.
To view the MS Excel spreadsheet above, you will need MS Excel. You can download a free copy of the latest version of Excel Viewer from Microsoft.
Top of page
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.
Top of page
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.
Top of page
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
Top of page
Last Updated: April 30, 2009
|