Stem cell research: Sorting fact from fiction

Last month in this space, I introduced a debate that isbrewing in scientific circles about whether we should make scientific articlesavailable to the general public instead of published in subscription-lockedjournals. While those in favor of this paradigm shift argue that copyright"chokes" creativity and Internet access shouldn't be restricted to a privilegedfew, opponents of the idea are concerned about how access to "free" contentwill affect its quality, and suggest the general public would actually benefitfrom having access to highly technical content.

In the midst of the continued debate on this issue, Isuggested we take a lesson from the book of journalism, a field that is stillgrappling with the unintended consequences of placing news content online, freeof charge to the general public. While the advent of Internet hasn't been allgloom and doom for newspapers—some are faring quite well as they find new waysto use technology to provide greater service to readers and advertisers—thenotion of "free news" has changed our expectations for news content anddelivery—but perhaps more importantly, it has also changed the way content isgathered and assembled.

The Internet, unfortunately, has birthed a generation ofbloggers and commentators who sit in dimly lit corners of coffee shops, hunchedover laptops that feed off of free Wi-Fi and launch their personal observationsof 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 thismaterial provokes thought and public discourse, some of it, in fact, is verydangerous.

The power to report the news is a privilege that is not tobe taken for granted. To do it properly, fairly and justly, it takes more thana keyboard, Internet access and an elementary grasp of linguistics. One musthave the context of how the news has been reported for centuries, the technicaltraining to do it responsibly and proficiency with various tools—stylebooks,ethics guidelines and software, to name only three. Being trade publicationjournalists, we here at ddn need to learn the ins and outs of life science andapproach all of our reporting almost as if we were doing so in a foreignlanguage.

Thus, those who lack this knowledge and training often dothe world a disservice when they attempt to take complex concepts and boil themdown enough so they are palatable for the masses. And as we learned from ourwork on a three-part series on stem cell research—the first part of whichbegins this month—slipshod reporting leads to misinformation,misconceptions and misguided public policy.

"For a science writer, reporting on these matters is a lotharder than covering the sports page," concedes Dr. Curt Civin, associate deanof research at the University of Maryland School of Medicine. "Generally,science takes at least a page of newsprint to accurately convey the facts. Andbefore you can write, it's really a niche you have to crawl deep down into tounderstand."

But since many news outlets report on many different nicheson a daily basis, there is often little time to dive into what can be highlytechnical subject matter. Consequently, what often appears in our hometownnewspapers is a very watered-down version of the facts, according to thevarious parties we interviewed for our report.

"Just because a story has colorful words in it, or can besummarized 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 withbalance based on input from several scientists," but they have "the additionalburden 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 publicconfusion and debate centers on the use of cell lines derived from humanembryos. While society has yet to reach consensus on the ethical and moraldilemmas presented by hESC research, it's important to remember that it's notthe only form of stem cell research, says Michael Gilkey, acting executivedirector of the National Center for Regenerative Medicine (NCRM) in Cleveland,Ohio.

"I enjoy stopping random people and asking, 'do you knowthat we all have stem cells in us right now?' Many people respond, 'no, wedon't-those come from embryos,'" Gilkey says. "The problem is, adult stem cellsare our body's natural repair mechanism and are what heal us when we areinjured. I think it would be useful for people to have a better, basicunderstanding of the differences between adult and embryonic stem cells beforereacting to this field."

The only way to change these misconceptions and make surethat all parties in this debate are basing their viewpoints on facts is througheducation—from young children to legislators to the media, and of course, tothe general public, according to the various parties we interviewed for ourspecial report. But thankfully, as key points in this debate are about to hittheir boiling point, those who are entrenched in the field of stem cellresearch are doing just that.

The NCRM, for example, does considerable educationaloutreach to high school students, presenting the finer points of stem cellresearch in clear, easy-to-understand terms. The center has also teamed up withEdheads.com, a provider of online education tools, to launch web-basededucation modules about stem cells. The modules, based on real clinical trials,offer an interactive learning experience to demonstrate the nature of stemcells and their importance in medicine and the development of new therapies.

Gilkey says he and his colleagues at the NCRM also "insertourselves into the political process as much as we can." Stem cell research hasbeen a hot-button issue for policymakers in Ohio since 2001, when PresidentGeorge W. Bush placed certain restrictions on how some stem cell lines could becreated. Ohio has laws on the books that permit researchers to conduct hESCresearch 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 withofficials at every level of government to battle misconceptions about matterslike human cloning and the creation of animal-human hybrids.

"You can't create human-animal hybrids like you see inscience fiction—the genome just doesn't work that way," he says. "When we starthearing things like that from legislators, many of us in the field know we needto do more outreach both to them and the public.

The problem we face, however, is some peopledo not want to learn more about the subject."

Sometimes, this type of outreach is initiated by folks whoare involved in stem cell research in some way, but are not currently workingin 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 forscience programs at Johns Hopkins University's Berman Institute of Bioethicsand a member of the Presidential Commission for the Study of Bioethical Issuesdivides her time between Baltimore and Washington, D.C.

"Asking researchers whose lives are consumed with their workto take a day off to go to Capitol Hill, or to meet with people in theiroffice, is a big ask," Mathews says. "Also, a big part of the problem inacademia is that you get rewarded for papers and grants, and sometimesteaching, depending on the institution. You do not get recognition for engagingin the political process. Sometimes, you are even looked down upon by theacademic 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 fewscientists in Congress or state legislatures," she points out. "The majority ofthem are politicians, lawyers, MBAs and small business owners."

And delivery of messages to these parties is also vitallyimportant, Mathews adds.

"One thing I stress and get on my soapbox about a lot iswhen you are speaking to people about science, you are not dumbing it down—youare translating," she stresses. "That's something that needs to be betterappreciated. We speak in jargon. Every scientist should be able to go toThanksgiving dinner and explain what they do—without PowerPoint slides."

Thanks to these efforts—and a little help from the sort ofin-depth reporting you will see in this issue—the tide may be changing, and thepublic will have more facts on which to base their opinions of stem cellresearch, our sources tell us.

"My anecdote is that years ago, when I was at a cocktailparty talking to people and told them I was a pediatric oncologist, theyquickly ran away," says Civin. "As they ran away, I called after them, "but wecure 80 to 85 percent of patients,' but they didn't stop running. Now, sinceall 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 havefor years hoped that the upside to all of this controversy is that it continuesto provide us with teachable moments."

The complex history of stem cell research yields hope forimproved human health, unresolved concerns

By Amy Swinderman, ddn Chief Editor

Parts of the whole

Just like stem cells, global research efforts with them aremany and varied

By Jeffrey Bouley, ddn Managing Editor