Genetic counselors help patients cope with some of the most devastating
health problems a human can face. Like detectives, they analyze clues from
a history of disorders or from prior genetic testing.
And there are some 3,000 known inherited conditions -- from the mild to
the deadly -- to contend with. Counselors work closely with doctors, nurses
and others to deal with the implications of genetic disorders.
They may coordinate medical testing to find out if the patient, or any
family member, carries genes that cause certain disorders. They then provide
information about genetic disorders to individuals and families and help sort
out what the information means.
Andrew Faucett, a genetic counselor in Savannah, Georgia, discusses the
meaning of "good news" and "bad news" with his patients. Sometimes, the information
changes a patient's life.
David Koehn, a genetic counselor at a children's hospital, often counsels
adults with a family history of Huntington's disease. It affects people in
their 40s, 50s or later, causing disability and death.
Genetic counselors offer emotional support to patients -- they support
whatever decisions patients make, and remain neutral and nonjudgmental. They
help patients cope with their feelings. "Part of our job is to help facilitate
the grieving process," says Barbara Pettersen, a genetic counselor with a
managed care organization in San Jose, California.
They may help couples weigh the risks of having a child with a genetic
disorder. The counselor helps the couple review their options and come to
a decision that they're comfortable with.
Some patients have medical histories that suggest they may develop a genetically
determined illness or disorder later in life. The counselor helps the person
understand the disorder and what it means for their future.
When appropriate, genetic counselors put individuals and families in touch
with community resources, such as medical experts and support groups. They
often follow along and offer emotional support as their patients undergo medical
testing and treatment.
Faucett knows his work makes a difference. Some of his patients tell him:
"You are the one person who's been honest with me."
Many genetic counselors teach or do genetics research. Faucett trains genetic
counseling students and does "in-service" training for medical students, physicians
and nurses. Others work in community genetics screening programs, coordinate
support groups or carry out administrative and management duties.
Most genetic counselors work in large medical centers or hospitals associated
with a medical school or university. Specialties include pediatrics, obstetrics,
oncology, neurology and endocrinology.
Counseling involves 35- to 40-hour weeks -- in research, government, private
genetics laboratories, managed care organizations or the offices of doctors
who specialize in genetic disorders. Some have private practices.
Genetic counselors need no special physical abilities -- they just need
to be empathetic and caring. "We're trained to give difficult information
as sensitively and kindly as possible," says Pettersen. "We stay with the
family as long as they need us."
Counselors read and study to stay current with the ever-changing knowledge
of genetics and disease.