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Stem cell research: Sorting fact from fiction
July 2011
SHARING OPTIONS:
![]() In the midst of the continued debate on this issue, I
suggested we
take a lesson from the book of journalism, a field that is still
grappling with the unintended consequences of placing news content online, free
of
charge to the general public. While the advent of Internet hasn't been all
gloom and doom for newspapers—some are faring quite well as they find new
ways
to use technology to provide greater service to readers and advertisers—the
notion of "free news" has changed our expectations for news content
and
delivery—but perhaps more importantly, it has also changed the way content is
gathered and assembled.
The Internet, unfortunately, has birthed a generation of
bloggers and commentators who sit in dimly lit corners of coffee
shops, hunched
over laptops that feed off of free Wi-Fi and launch their personal observations
of the world into cyberspace—rants that sometimes get
reported as fact,
particularly if it's a slow news day and someone picks it up on Twitter. OK,
perhaps that's an extreme mental picture of blogging, but while some of this
material provokes thought
and public discourse, some of it, in fact, is very
dangerous.
The power to report the news is a
privilege that is not to
be taken for granted. To do it properly, fairly and justly, it takes more than
a keyboard, Internet access and an elementary
grasp of linguistics. One must
have the context of how the news has been reported for centuries, the technical
training to do it responsibly and
proficiency with various tools—stylebooks,
ethics guidelines and software, to name only three. Being trade publication
journalists, we here at ddn need
to learn the ins and outs of life science and
approach all of our reporting almost as if we were doing so in a foreign
language.
Thus, those who lack this knowledge and training often do
the world a disservice when they attempt to take complex
concepts and boil them
down enough so they are palatable for the masses. And as we learned from our
work on a three-part series on stem cell research—
the first part of which
begins
this month—slipshod reporting leads to misinformation,
misconceptions and misguided public policy.
"For a science writer, reporting on these matters is a lot
harder than covering the sports page," concedes Dr. Curt Civin, associate dean
of
research at the University of Maryland School of Medicine.
"Generally,
science takes at least a page of newsprint to accurately convey the facts. And
before you can write, it's really a niche you have to
crawl deep down into to
understand."
But since many news outlets report on many different
niches
on a daily basis, there is often little time to dive into what can be highly
technical subject matter. Consequently, what often appears in our
hometown
newspapers is a very watered-down version of the facts, according to the
various parties we interviewed for our report.
"Just because a story has colorful words in it, or can be
summarized with a three- to five-word headline, that
doesn't mean it is correct,"
Civin says. Writers must "tell a story as they heard it and tell it with
balance based on input from several
scientists," but they have "the additional
burden that they must tell the truth. A balance may not be the truth," he adds.
For the stem cell research arena, the main source of public
confusion and debate centers on the use of cell lines derived
from human
embryos. While society has yet to reach consensus on the ethical and moral
dilemmas presented by hESC research, it's important to remember
that it's not
the only form of stem cell research, says Michael Gilkey, acting executive
director of the National Center for Regenerative Medicine (NCRM) in Cleveland,
Ohio.
"I enjoy stopping random people and asking, 'do you know
that we all have stem cells in us right now?' Many
people respond, 'no, we
don't-those come from embryos,'" Gilkey says. "The problem is, adult stem cells
are our body's natural repair mechanism
and are what heal us when we are
injured. I think it would be useful for people to have a better, basic
understanding of the differences between adult
and embryonic stem cells before
reacting to this field."
The only way to change these
misconceptions and make sure
that all parties in this debate are basing their viewpoints on facts is through
education—from young children to
legislators to the media, and of course, to
the general public, according to the various parties we interviewed for our
special report. But thankfully,
as key points in this debate are about to hit
their boiling point, those who are entrenched in the field of stem cell
research are doing just that.
The NCRM, for example, does considerable educational
outreach to high school students, presenting
the finer points of stem cell
research in clear, easy-to-understand terms. The center has also teamed up with
Edheads.com, a provider of online
education tools, to launch web-based
education modules about stem cells. The modules, based on real clinical trials,
offer an interactive learning
experience to demonstrate the nature of stem
cells and their importance in medicine and the development of new therapies.
Gilkey says he and his colleagues at the NCRM also "insert
ourselves into the political process as much as we can." Stem cell
research has
been a hot-button issue for policymakers in Ohio since 2001, when President
George W. Bush placed certain restrictions on how some stem
cell lines could be
created. Ohio has laws on the books that permit researchers to conduct hESC
research as long as they do not derive any new cell
lines—and each year,
lawmakers propose even stricter policies with regard to hESC research. Thus,
Gilkey says he and other concerned parties often find
themselves engaging with
officials at every level of government to battle misconceptions about matters
like human cloning and the creation of animal-
human hybrids.
"You can't create human-animal hybrids like you see in
science fiction—the
genome just doesn't work that way," he says. "When we start
hearing things like that from legislators, many of us in the field know we need
to do
more outreach both to them and the public.
The problem we face, however, is some people
do not want to learn
more about the subject."
Sometimes, this type of outreach is initiated by folks who
are involved in
stem cell research in some way, but are not currently working
in a lab. That's because "scientists at large academic centers are crazy busy,"
says
Dr. Debra J.H. Mathews, who in her roles as the assistant director for
science programs at Johns Hopkins University's Berman Institute of Bioethics
and a member of the Presidential Commission for the Study of Bioethical Issues
divides her time between Baltimore and Washington, D.C.
"Asking researchers whose lives are consumed with their work
to take a day off to go to Capitol Hill, or to meet with
people in their
office, is a big ask," Mathews says. "Also, a big part of the problem in
academia is that you get rewarded for papers and grants, and
sometimes
teaching, depending on the institution. You do not get recognition for engaging
in the political process. Sometimes, you are even looked down
upon by the
academic community for engaging on that level."
But when Mathews and her colleagues do
"go up on the Hill,"
as the saying goes, their efforts "do have a great impact."
"It's
important to remember that there are very few
scientists in Congress or state legislatures," she points out. "The majority of
them are politicians,
lawyers, MBAs and small business owners."
And delivery of messages to these parties is also
vitally
important, Mathews adds.
"One thing I stress and get on my soapbox about a lot is
when you are speaking to people about science, you are not dumbing it down—you
are translating," she stresses. "That's something that needs to be
better
appreciated. We speak in jargon. Every scientist should be able to go to
Thanksgiving dinner and explain what they do—without PowerPoint
slides."
Thanks to these efforts—and a little help from the sort of
in-depth reporting you will
see in this issue—the tide may be changing, and the
public will have more facts on which to base their opinions of stem cell
research, our sources tell
us.
"My anecdote is that years ago, when I was at a cocktail
party talking to people and told
them I was a pediatric oncologist, they
quickly ran away," says Civin. "As they ran away, I called after them, "but we
cure 80 to 85 percent of
patients,' but they didn't stop running. Now, since
all the stem cell controversies, when I say, 'I am a stem cell researcher,'
they want to talk
for 30 minutes, and ask, 'well, is this or that true?' I have
for years hoped that the upside to all of this controversy is that it continues
to
provide us with teachable moments."
SEE ALSO:
The complex history of stem cell research
yields hope for
improved human health, unresolved concerns
By Amy Swinderman, ddn Chief Editor Just like stem cells, global research efforts with them are
many and varied By Jeffrey Bouley, ddn
Managing Editor Back |
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