If you, or someone you loved, had a risk of developing cancer or of having
a baby with a birth defect, would you want to know? If you knew there was
a risk, what would you do about it? Genetic counselors help people face these
questions.
This is a young profession, one evolving with the growth of medical and
scientific knowledge about genetics.
Genes determine your eye color and your hair texture. They influence how
tall you'll be. They may predict your talent for music, art, making friends,
doing math or playing soccer. But your genes can also cause mental retardation.
They can damage bones, muscles or nerves, and cause disorders of the blood
and heart. As we learn about more genetic links to health problems, counseling
becomes more important.
"Someone needs to be able to sort through the information and explain it
to the average patient. That person is the genetic counselor," says Andrew
Faucett, a counselor in Savannah, Georgia.
Faucett counsels pregnant women and their families. Many of his patients
are women over 35 -- some genetic abnormalities, like Down syndrome,
occur more frequently to babies born to older mothers. Others have a family
history of birth defects. Some couples learned though prenatal testing that
their baby has a genetic defect.
Faucett consults with doctors to investigate the risks associated with
his patient's problem. "Then I discuss the situation with them. I help
them understand the tests and what the results mean to them.
"My most rewarding cases are those where couples have a pregnancy with
multiple problems. I help get them through the crisis. When they're pregnant
again, I'm the first person they call," says Faucett.
Katherine Henderson likes being a health-care professional and being part
of a team. Henderson is a genetic counselor at a children's hospital. She
enjoys knowing about the medical and scientific aspects of genetic conditions,
and getting to know families.
"To be a successful genetic counselor, you need good listening skills,"
says Henderson. "You need to enjoy keeping yourself educated on the advances
in genetics. You should also be able to work independently as well as part
of a team."
Barbara Pettersen is a genetic counselor for a managed care organization
in San Jose, California. "It's important for genetic counselors to be
sensitive to the needs of others. They also must be accepting of the values
of other people and support them in whatever path they decide to follow,"
says Pettersen.
Knowing about a genetic risk can be troubling. And just because scientists
link a disorder to a faulty gene doesn't mean that doctors can cure,
or even treat, the problem. Doctors sometimes have a hard time talking to
their patients in everyday terms about genetics. It's not always easy
for them to discuss how likely it is that the patient may develop a genetic
disease, or that their child might be born with a birth defect.
Genetic counselors help doctors and other health-care professionals gather
and communicate genetic information to patients. Counselors help people look
at all the available information and give their patients room to weigh all
the facts.
Some couples with a family history of genetic problems choose not to have
any children. Some get genetic testing to find out if their unborn baby has
the same genetic flaw that affected an older child or another member of their
family.
Genetic counselors can also share good news with their patients. But even
good news can knock people for a loop. David Koehn counsels people with a
family history of genetic problems, including Huntington's disease, a
fatal disorder that strikes adults in their 40s or 50s.
People make lots of decisions based on the belief that they carry the Huntington's
gene. Some avoid marriage, don't attend college or don't pursue
a career because they assume it's just a matter of time before it strikes.
But some of Koehn's patients discover that they don't carry the
deadly gene. Now they face living a brand new life.
Genetic counselors help people evaluate how knowing genetic information
will affect all aspects of their lives.
People who do seek out genetic information can use information to change
their lifestyle. Encouraged by genetic counseling, a woman stops drinking
alcohol before she gets pregnant. A man who might develop diabetes improves
his eating habits, loses weight and starts exercising. Others decide to improve
their relationships with loved ones before a disease makes them unable to
speak or move.
Genetic counseling can be a very rewarding career. "My job is never boring,
and I think it will continue to grow for many years," says Faucett.