Policy
RESEARCH UNDER FIRE:
WHY SCIENCE MATTERS
IN POLICYMAKING
by ALLYSE FALCE
making,” says Georges Benjamin, MD, executive
director of the American Public Health
Association. And, history shows that cherry-
picking research studies “results in bad policy
and therefore enormously increases the risk to
human health,” he says.
RESEARCH IS FUNDAMENTAL to finding a cure
for Parkinson’s disease (PD). Research is critical
also to inform public policies that safeguard
the health of Americans, both with and without
PD. For instance, the Environmental Protection
Agency (EPA) regulates the use of chemicals
that increase risk of disease, utilizing scientific
evidence to enforce legislation. However, a
recent movement in Washington, D.C. threatens
to disrupt this approach by devaluing the role of
science in policymaking.
The proposed rule has implications for the
Parkinson’s community currently urging the EPA
to ban paraquat, a commonly used herbicide
linked to increased Parkinson’s risk. Several of
the studies confirming this link keep volunteer
data private. If the proposal is adopted, the EPA
could make a decision about the use of paraquat
without consulting all relevant research. (As of
this writing, changes in EPA leadership since
April have not affected the proposed rule.)
In April, the EPA Administrator proposed a rule
that would bar the agency from considering
studies in which participants’ health information
is confidential — a practice followed by most
studies. As such, the rule would severely limit
what research the EPA can take into account
when setting regulations. The EPA says this
proposal will push researchers to make their
work more transparent. The scientific and
medical communities agree that research
transparency is of the utmost importance, but
they note that mechanisms to achieve this goal
already exist. And, they add there are some
instances in which study data cannot be made
public because it would expose personal details
that could be linked back to participants who
wish to remain anonymous.
This summer, The Michael J. Fox Foundation
joined 70 medical and scientific groups to
convince the EPA to abandon the rule. The
Foundation testified against the proposal at
EPA headquarters and Parkinson’s community
members sent the agency 3,500 comments
voicing their concerns.
Now, the EPA must review and respond (likely
through an official report) to the 600,000
comments submitted by the American public
before it decides on the rule.
Visit michaeljfox.org/policyblog for updates on
this ongoing process.
“This proposal is really an effort to allow the
EPA to restrict the science it uses for decision-
“We have to use our voices for those who need us,
and for the greater purpose of finding a cure.”
— Angie Hott, Parkinson’s advocate
Explore our advocacy toolkit and how you can get involved: michaeljfox.org/advocacytoolkit.
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The Fox Focus