Career in Genetic Counseling
Explore these pages to find out more about a career in Genetic Counseling.
Genetic Counseling as a Profession
Genetic counselors are health professionals with specialized
graduate degrees and experience in the areas of medical
genetics and counseling. Most enter the field from a variety
of disciplines, including biology, genetics, nursing,
psychology, public health, and social work.
Genetic counselors work as members of a health care team, providing
information and support to families who have members with
birth defects or genetic disorders and to families who
may be at risk for a variety of inherited conditions.
They identify families at risk, investigate the problem
present in the family, interpret information about the
disorder, analyze inheritance patterns and risks of recurrence
and review available options with the family.
Genetic counselors also provide
supportive counseling to families, serve as patient advocates
and refer individuals and families to community or state
support services. They serve as educators and resource
people for other health care professionals and for the
general public. Some counselors also work in administrative
capacities. Many engage in research activities related
to the field of medical genetics and genetic counseling.
Adopted by the
National Society of Genetic Counselors, Inc. 1983
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Roles of Genetic Counselors
Many genetic counselors work as members of a healthcare team;
counseling patients about genetic conditions, coordinating clinics, providing patient education,
and educating other health professionals about genetics.
Increasing demands for genetic expertise in health related fields has offered some genetic counselors new ways of
using their training in genetic counseling:
Genetic Counselors in Research
I am a study coordinator for clinical
research projects to find genes, learn about the natural
history of disorders, and run a clinical trial using
alternative medicine to address chronic pain and suffering
in persons with hereditary connective tissue disorders. I
am responsible for study design, patient recruitment,
data collection and management, providing genetic counseling
and psychosocial support, delivering intervention services,
data analysis and dissemination of results.”
“My responsibilities as a research
genetic counselor include identification and recruitment
of study participants, designing recruitment materials,
administering cognitive testing to participants, providing
pedigree analysis to assess appropriateness for the
study, and maintaining the study databases.”
“I spend 50% of my time seeing patients
in clinic and the other 50% of my time doing research.
In my research position, I am currently involved with
some collaborative projects with a large pharmaceutical
company; I have written a protocol for an asthma survey
that will be conducted in an Hispanic population and
have written part of a booklet on asthma genetics for
the company.”.
“I am a genetic counselor working at a university as
a study coordinator for GENECARD, a gene identification
study aimed at finding the genes that contribute to
early onset coronary artery disease (CAD). While most
of my time is spent on family ascertainment, it is also
my job to monitor legal and ethical topics concerning
genetics, genetic research, and genetic counseling,
and provide updates and reviews of these issues to colleagues
in and out of the research group. It is also my job
to write grants and participate in the development and
implementation of research ideas pertaining to ethical,
legal and social issues related to human gene identification
research.”
“As a research coordinator for genetic studies of neurological
conditions, my job description has included recruiting
families for linkage studies, tracing family histories
to link families together, coordinating research evaluations,
assisting in exams and videotaping, planning and executing
field trips to examine small and large families, and
database management of all the extensive exam data we
collect.”
Genetic Counselors in Diagnostic Laboratories
“I work for a genetic laboratory
as a regional genetic counselor. I travel in the Western
states providing training for genetic counselors and
other health care providers interested in educating
their patients about hereditary breast/ovarian and colon
cancer and testing options. I also do presentations
for both professional groups (eg tumor boards, grand
rounds) and community forums.”
“I have worked for over two years in a clinical diagnostic
laboratory that.also performs research in various areas. My
role is mainly as a liaison.between the lab and the
referring physicians and their patients. I receive.and
make most phone calls to physicians about test results,
sample.submissions, etc., and am available for their
patients should they have.questions. I also help monitor
sample submissions (i.e. do a little.marketing), develop
brochures and provide most of the content of our.website,
have teaching responsibilities inside and outside of
the lab, and. I am involved in several on-going research
projects. Finally, I am also.involved in the day-to-day
activities within the lab such as working through.difficult
test results and helping with personnel issues and protocols.within
the lab.”
“As Area Manager for a diagnostic laboratory, I am responsible
for facilitating genetic susceptibility testing for
cancer risk in a 6 state region. I work with existing
cancer risk assessment programs to make sure that they
have the latest information and resources to perform
genetic susceptibility testing. I also work to educate
the surrounding communities (both physician and lay
population) about genetic susceptibility testing for
cancer risk and the availability of genetic counseling
and testing at appropriate locations.”
“As Manager of Clinical Development
for a diagnostic laboratory, I develop and implement
innovative, cost effective, clinical genetic services
and programs. I serve as a resource to the general staff,
managed care organizations, and health care providers
regarding genetic case management, standardized practice
guidelines and outcomes. I provide consultation to the
marketing department regarding clinical services and
genetic testing of marketing materials. I also manage
the development and growth of regional genetic counseling
services.”
Genetic Counselors Working for Internet Companies and Websites
“I'm a subject matter expert specializing
in website content writing and.development and software
tool development. I'm also involved in conducting.research
studies to test our tools in patient and non-patient (general).populations.
As part of the genetics team, we are also called upon
to.provide input on business development matters and to
participate in.marketing/PR efforts (i.e., representing
the company at trade show booths).”
"My primary role is in verifying information about
laboratories for online publication. I also verify nomenclature
used by the laboratory by checking current resources.
Both of these roles are for all new and updated laboratory
profiles. A secondary role is to read, review, and edit
each profile in its entirety.”
“I’m the Director of Clinical services for a company developing
online products in genetics for physicians and consumers.
I’m responsible for overseeing the work of team projects
and managing clinical staff. I participate in the development
of new products and services, and use my clinical experience
to provide the ethical and clinical framework around business
development decisions.”
Genetic Counselors in Private Practice
“ I decided to enter private practice
so I would have autonomy and flexibility. The autonomy
allows me to practice as I want to, which is to. give
excellent care. The flexibility allows me to work on
my time schedule, which tends to be later at night and
on weekends, especially for the research and reading.
Cancer risk assessment provided the perfect field for
me, as I can be somewhat more independent, and we, as
counselors, have unique expertise in this area. I still
do all the general patient related things that most
genetic counselors do but in addition, I market my services,
negotiate contracts and services with physician offices,
develop my own written information, and monitor my own
budget and billing.”
Genetic Counselors
in the Pharmaceutical Industry
"I work for a large pharmaceutical
company as a genetic education specialist. My responsibilities
include: identifying and characterizing the key genetics
education and training needs for the diverse array of
business groups within and associated with the company;
creating a worldwide strategic plan for genetics education
that reflects the international perspectives, experiences,
and sensitivities relevant to the genetics department
objectives; creating, implementing and analyzing metrics
for assessing the impact of the genetics education and
training programs developed; acting as a corporate resource
for expertise in genetics content and education; collaborating
with business groups within the company to develop genetics
education materials for use by outside constituents;
and developing innovative educational materials in multimedia
formats for use internally and externally."
Genetic Counselors
in Public Health
I am a registry coordinator for my state's
Fetal Abnormalities Registry, a research project supported
by the Center for Disease Control and through the department
of Health and Senior Services. My job responsibilities
include obtaining informed consent and administering
an hour-long questionnaire (eliciting information regarding
pregnancy, family and medical history in depth) in person
or via telephone. Other administrative duties include
personnel supervision, database construction & maintenance,
web site construction & maintenance, and obtaining and
reviewing medical records."
"My job, within the state Bureau of Chronic Disease
Services in Division of Chronic Disease Prevention and
Adult Health, is to raise awareness of genetics in our
programs regarding common diseases of adult onset, including
cancers of the breast, ovary, colon and prostate; cardiovascular
disease; Alzheimer's disease and diabetes."
Genetic Counselors Teaching in Universities
"For the past 9 years, I have been the Director of Clinical Placements for a graduate training program in Genetic Counseling. I teach counseling and preprofessional courses and supervise the clinical internships. I am also involved in administration (planning and admissions) of the program as well."
Genetic Counselors in Health Consulting
"I work for a Fortune 500 health
consulting firm as the Deputy Project Director on a
federal research project to evaluate 120 birth defects
prevention demonstration (grant) programs for drug addicted
mothers and their children. I develop evaluation measures,
train site visitors, work with projects around the country
to facilitate data collection and site visits, conduct
site visits, write summary reports and execute a national
meeting each year."
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Demographics
Genetic counselors have diverse educational credentials
and background experiences. Membership information is
collected yearly in October, while a detailed Professional Status Survey is taken in
even years.
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Certification
Certification in genetic counseling is available by the
American
Board of Genetic Counseling (ABGC). Requirements include
documentation of the following: a graduate degree in genetic
counseling; clinical experience in an ABGC-approved training
site or sites; a log book of 50 supervised cases; and
successful completion of both the general and specialty
certification examination.
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Training Programs
Currently, numerous training
programs offer master's degrees in genetic
counseling in the United States. Programs are also offered
in Canada, Australia, England and South Africa. Coursework
typically includes clinical genetics, population genetics,
cytogenetics, and molecular genetics coupled with psychosocial
theory, ethics and counseling techniques. Clinical placement
in ABGC-approved medical genetics centers is an integral
part of the degree requirements. Additional programs
accept nurses seeking post-graduate degrees with
specialty
training in genetics.
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Career
Opportunities
The genetic counseling profession is rapidly expanding
and diversifying. Heightened public awareness, coupled
with scientific advances in adult disorders and reproductive
technologies, have increased the demand for genetic
counselors in clinical, teaching, administrative, commercial,
private practice and consulting environments. This trend
is expected to continue well into the 21st century ...and
beyond.
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Families
Served
Individuals and couples who may benefit from genetic
counseling include:
- Persons or families with a history
of cleft lip or palate, congenital heart defects,
spina bifida, short stature or other physical birth
defects
- Persons or families with genetic
disorders such as Down syndrome, Huntington disease,
cystic fibrosis, muscular dystrophy, PKU, hemophilia
and other inherited disorders
- Persons or families affected with
mental retardation, hearing or visual impairments,
learning disabilities or other conditions which could
be genetic
- Persons or families with a history
of certain cardiac, cancer, psychiatric or neurogenetic
adult disorders
- Persons with a history of multiple
miscarriages, stillbirths or early infant deaths involving
multiple congenital anomalies
- Women age 34 and over who are
pregnant or are planning pregnancy
- Pregnant women at high risk due
to abnormal MSAFP or ultrasound screening tests
- Pregnant women concerned about
the effects of exposure to medication, drugs, chemicals,
infectious agents, radiation or certain work conditions.
This subspecialty is called teratology.
- Persons in specific ethnic groups
or geographic areas with a higher incidence of certain
disorders, such as Tay Sachs disease, sickle cell
disease, or thalassemias
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This information is provided by the National Society
of Genetic Counselors, Inc. to help individuals interested
in learning more about the genetic counseling profession.
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