What Is
a Genetic
Counselor?
Genetic counselors are professionals with
expertise in both medical genetics and
counseling. They can provide education
and emotional support to people who
are considering or have undergone
genetic testing for any reason: people
who have Parkinson’s disease ( PD) o r
are at risk for the disease ( because of
a genetic mutation or family history of
PD), or individuals who are just curious
about their genetics. Genetic counselors can help you explore
the pros and cons of genetic testing,
and what genetic testing can and can’t
tell you and your loved ones. They can
offer practical advice and assistance,
such as comprehensive resources on the
Genetic Information Nondiscrimination
Act or tips on how to talk with your loved
ones about Parkinson’s. (See “What to
Consider before Genetic Testing,” on
pg. 36.)
Jennifer Verbrugge, MS, CGC, LGC, a
certified genetic counselor at Indiana
University who works with participants in
MJFF’s Parkinson’s Progression Markers
Initiative biomarker study, says, “ The
term ‘counseling’ can have negative
connotations, but genetic counseling is
primarily a discussion about inherited
aspects of disease and a place for you to
ask questions before and after genetic
testing is performed.” When meeting with a genetic counselor,
you can expect to go over much more
than your genetic test results and their
potential implications for you and your
family. You’ll also review:
She adds, “Anyone who’s considering
genetic testing — whether it’s solely
for their own knowledge or to participate
in a genetic research study — could
benefit from sitting down with a
genetic counselor.” + + Your family’s history of Parkinson’s,
whether anyone has had genetic
testing, and which, if any, mutations
they carry; and
+ + Basic information on Parkinson’s;
+ + Details on Parkinson’s genetics,
including what is and isn’t currently
known, and how different mutations
are inherited;
+ + Specific questions you have.
Common concerns often center on
an individual’s and family members’
exact PD risk and what can be done
to mitigate this. Research in this area
is active, but doctors don’t yet have
definitive answers.
You can prepare for your visit by
gathering any genetic information from
your family that you may have. Genetic
counselors are primarily interested
in older relatives (e.g., g randparents,
parents, aunts, uncles and older siblings)
but information about younger siblings
and children can be important too.
You should also write down the main
concerns you’d like to address.
Your doctor can refer you to a genetic
counselor, or you can find one in
your area by searching online. The
National Society of Genetic Counselors
maintains a directory of counselors at
findageneticcounselor.com. Be sure to
look for counselors who specialize in adult
genetics or neurogenetics. Or, if you’ve
gotten testing on your own, through an
online service for example, you may want
a counselor with expertise in “at-home” or
“direct-to-consumer” testing.
Watch more of Jennifer’s story at michaeljfox.org/ParticipantPack.
Chapter 3 — Genetics and Parkinson’s Research
37