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Stem cell research: Sorting fact from fiction
Last month in this space, I introduced a debate that is brewing in scientific circles about whether we should make scientific articles available to the general public instead of published in subscription-locked journals. While those in favor of this paradigm shift argue that copyright "chokes" creativity and Internet access shouldn't be restricted to a privileged few, opponents of the idea are concerned about how access to "free" content will affect its quality, and suggest the general public would actually benefit from having access to highly technical content.
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."
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