A warning against “research parasites” may
open the door to better data sharing
It all started with an editorial
published by the editors of The
New England Journal of Medicine
(NEJM), innocuously titled, “Data
Sharing.”1
The authors, Dan L. Longo, MD,
and Jeffrey M. Drazen, MD, praised
the idea of data sharing in theory,
but contend that one of the unintended consequences of sharing research data may be the emergence
of a new class of researchers known
as “research parasites,” described
as “people who had nothing to do
with the design and execution of
the study but use another group’s
data for their own ends, possibly
stealing from the research productivity planned by the data-gatherers, or even use the data to try to
disprove what the original investigators had posited.”
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ASH Clinical News
Before long, a heated debate broke out in the
research community about the merits of open
data sharing, with proponents of data sharing
arguing that science moves forward through
collaboration, not through exclusion. Data
sharing, they maintained, is the necessary
evolution of medical research. Using hashtags
like #researchparasite, #IAmaResearchParasite,
and #opendata they expressed their support for
data sharing and breaking down the silo mentality in scientific research. On the other side,
researchers are concerned about the unfair use
of data without attribution.
The vastly opposing viewpoints on the issue
suggest that data sharing might not be as simple in reality as it is in theory. The recent debate
brought to light the divide that exists between
the clinical investigators who collect the data
and the scientists who later want access to
those data – the hosts and the parasites, if you
will. ASH Clinical News spoke with members
of the research community about the ethics
behind data sharing, the potential drawbacks
of the open-data movement, and the questions
that still need to be answered.
The Case for Data Sharing
“One of the big reasons why a bunch of us have
been advocating for data sharing is we think
that not sharing data is actually a violation
of the promise we made to patients,” Vinay
Prasad, MD, MPH, a hematologist-oncologist
and an assistant professor of medicine at the
Oregon Health and Sciences University, said.
Much of the initial conversation about
data sharing has focused on clinical trial data
for several reasons, according to Dr. Prasad.
Clinical trial data are ideal for data sharing
because of the implicit consent process already built into trial designs. Patients, in most
cases, are already told their data will be used
to help future patients, with the implication
that the data may be used beyond the scope of
one study.
The volume of data collected during a
clinical trial can also make it difficult for a
single research team to have the time and
resources to fully use all of the data that have
been gathered, making collaboration among
teams a necessity.
“I’ll be perfectly honest, I’ve done a lot of
May 2016