Participating in
Genetic Research
What to Expect
Both people with Parkinson’s disease (PD) and
their loved ones can play a critical role in the
pursuit of a PD cure by participating in genetic
research. And everyone with PD, not only those
with a genetic mutation, can benefit from the
insights of genetic research. So it’s important
to understand what genetic research entails, if
and how it involves genetic testing, and what the
benefits and risks are.
Everyone Can Advance
Genetic Research Genetic Research Versus
Genetic Testing
No matter whether you have Parkinson’s,
a family member with PD or a
Parkinson’s-associated genetic mutation
— you can help push breakthroughs
forward. By studying the genes of
people with PD, their relatives and
control volunteers, researchers learn
about the genes linked to Parkinson’s,
how they interact with other genes
and environmental factors to cause
(or protect against) disease, how they
correlate with specific PD symptoms
and progression, and how they could be
modified or targeted to treat disease. By
studying broad populations of people
both with and without PD, researchers
also can find as-yet undiscovered
mutations associated with Parkinson’s. Participating in genetic research is
different than simply getting genetic
testing. In research, DNA samples from
study participants are collected and
analyzed to help answer a scientific
question. Genetic testing carried out as
part of a research study is not necessarily
intended to provide you with personal
medical information and, in some studies,
you may not even learn your results.
Each study has a protocol that specifies
whether, and how, participants will
learn the results of their genetic testing.
The reasons why trials don’t share
individuals’ data vary, but often it’s
because this information does not
directly impact medical care or other
decision making.
Chapter 3 — Genetics and Parkinson’s Research
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