Photo courtesy of Genetic Services at Elwyn
By the time many parents see Brenda
Finucane, all they want is an explanation
for their child's puzzling problems. It's Brenda's job to give parents that
explanation and help them move forward.
Brenda is a genetic counselor in Elwyn,
Pennsylvania. Her job is to inform clients
about genetic disorders and help them to
understand and manage the disorder. Many
families have struggled with a child's problem
for a long time, and Brenda helps give a name
to some of their concerns. "For a lot of families,"
she says, "it can really be a big relief to
finally have an answer."
One of Brenda's areas of expertise is in
a disorder called fragile X syndrome. This
condition can result in physical, intellectual,
emotional, or behavioral problems—and is
a common cause of some disorders, such as
Like nearly all genetic counselors, Brenda
begins work on each case by meeting with
clients and gathering medical and other information.
She uses this information to construct
a "pedigree," a specialized family tree. The
pedigree is a health history of an individual's
biological family and includes detailed information
ranging from family members' inherited
conditions, such as blindness and deafness,
to their ages and causes of death.
A pedigree assists genetic counselors in
mapping genetic patterns within the family.
For example, Brenda might encounter a child
whose genetic testing for autism has confirmed
fragile X syndrome as the cause, and
the mother has been identified as a carrier.
The pedigree shows that a maternal aunt has
a child with special needs, another maternal aunt is being treated for infertility, and the
maternal grandfather is suffering from Parkinson's
disease. All of these can be attributed to
the fragile X gene.
Brenda's role in such cases is multifaceted.
First, she must translate the complex
scientific concepts involved into language that
the client can understand. Second, she must
share the news with the client—sometimes the
most difficult part of her job. "Often, families
are hoping something will go away," she says,
"and I have to tell them that it won't."
Finally, Brenda helps the client understand
how to deal with the condition. As
Brenda says, "We help families adapt to the
information they get from us." For example, a
parent might feel guilty about being the carrier
of a genetic condition. Brenda helps the
parent adapt emotionally, assuring him or her
that guilt is a common reaction and explaining
that our genetic makeup is not something we
In explaining a child's genetic condition,
Brenda also makes parents aware of how the
condition may progress, including its medical,
educational, and psychological ramifications.
She then directs clients to other resources,
such as support organizations and healthcare
or educational specialists, for more assistance.
Genetic conditions have implications for
the extended family, but the information often
is too complex for the client to explain. A
genetic counselor might write a letter summarizing
the condition to help clients share this
information with other family members.
When it first emerged about 50 years
ago, genetic counseling focused primarily on
prenatal testing to detect genetic conditions. But counseling services have evolved to keep
pace with a greater knowledge of genetics and
wider application of genetic diagnostic testing.
Today, there are several types of genetic
counselors, and their expertise covers thousands
of genetic conditions and spans the
entire human life cycle. Genetic counselors
work in a variety of specializations, such as
cancer counseling, prenatal counseling, or
pediatrics—Brenda's specialty. And some
counselors develop specific areas of expertise,
as Brenda has with fragile X.
The U.S. Bureau of Labor Statistics does
not have data on employment or wages for
genetic counselors. According to the American
Board of Genetic Counseling, however,
there are roughly 2,400 certified genetic
counselors in the United States. And they earn
a median annual salary of about $63,000,
according to data from the National Society of Genetic Counselors.
Genetic counselors must have a master's
degree in genetic counseling from a program
accredited by American Board of Genetic
Counseling. There are currently 30 of these
master's programs nationwide, and admission
to them usually requires completion of significant
undergraduate coursework in biological
science. The programs combine scientific
aspects of genetics with counseling study and
take about 2 years to finish. In addition, most
employers require certification, and some
states require licensure.
Most genetic counselors work in medical
offices and hospitals. Brenda, however, works
for a nonprofit organization that helps people
who have developmental disabilities. She
travels around the country to provide consultations
in schools, developing behavioral and
educational plans for students with fragile X
and other genetic syndromes. She also handles
most of her own administrative tasks, such as
scheduling and billing.
All genetic counselors need science
knowledge and interpersonal skills. That
blend was what first appealed to Brenda, and
that appeal has lasted more than 25 years. "I
love the science, but I didn't want to work in
a lab," she says. "Genetic counseling allows
me to combine my lifelong interest in science
with the opportunity to interact with families
affected by genetic disease."