'A Reliable Voice of Reason:' A Look at a California Stem Cell Researcher/Blogger

Paul Knoepfler's TED talk has drawn more than one million views

The journal Science this week profiled UC Davis stem cell scientist and blogger Paul Knoepfler, describing him both as a consumer watchdog and a "dogged voice of caution."

In the article by Kelly Servick, George Daley,  dean of the Harvard Medical School, also called Knoepfler a "reliable voice of reason."  Daley noted that academics are "often more comfortable being provincial and insular, and not … mixing it up in the public debates."

Knoepfler began blogging seven years ago after -- at the age of 42 -- he was diagnosed with prostate cancer and given a roughly 50-50 chance of survival. He told Servick that he wanted to "expand how I had impact, beyond just the pure science." From the start, his blog went beyond science to patient advocacy.

Readers of the California Stem Cell Report are likely to be familiar with Knoepfler's blogging efforts, which are often reported here. We have followed his efforts since their inception. Over the years, his voice has grown to be heard in publications across the country. Just this week, he was widely quoted in coverage of the ground-breaking research into gene editing of human embryo.

(An aside from this writer, who is quoted in the Servick piece: One of the reasons that Knoepfler is quoted widely is that he returns media phone calls and can "speak English" -- meaning that he can explain science in terms that most persons can understand, at least those who read newspapers. That could have something to do with having an undergraduate degree in English.)

The Science article focused heavily on Knoepfler's writing about unregulated stem cell clinics, including research by him and Leigh Turner of the University of Minnesota that documented for the first time the size of that particular industry in this country. Their work counted 570 clinics with the most in California.

Why the focus on the unregulated treatments? Knoepfler told Science:

"'They were just saying, ‘Screw the rules, we're just going to set up shop and put up a website and start injecting people with stem cells....I saw that as a threat, first to patients, but to the field as well.'"  

Why Does It Matter? Clues for Scientists When Dealing with Reporters

Scientists -- like Boy Scouts -- should be prepared when that call comes in from one of the ink-stained wretches of the mainstream, print media or one of the harried online reporters who hardly have time to think.

Based on decades of experience on behalf of the folks who own the presses, I can tell you that is a good admonition. It was reinforced mightily by another few years on the opposite side of the reporters' notebook, where it became readily apparently that interviewees need to think carefully about the message they want to impart.

Today, I ran across some advice to journalists who aspire to query researchers. I am passing it along to the readers of the California Stem Cell Report, 99.9 percent of whom would never see it otherwise.

It helps give our readers a frame of reference and a clue to what to expect when a mass media opportunity comes knocking. So here it is, questions for journalists to ask scientists, as prepared by Elissa Yancey of the Poynter Institute, a well-respected Florida enterprise involved in journalism training.

• "Why does this study matter?
• "Why did you want to do this study?
• "How does this study relate to your other work?
• "What was your role in the study?
• "What surprised you the most?
• "Did you change any of your or your family’s habits as a result of anything you learned from this study?
• "What are the economic stakes of the study/topic from your perspective? Your employer's or funder's perspective? (i.e., whose profits / earnings might be harmed or helped by this study? Who is invested in it?)
• "What comes next? (More studies? Different funders? Legislation?)"

Communications Void at California Stem Cell Agency

During the next few months, the California stem cell agency is embarking on two rounds of grants worth $312 million, with a multimillion dollar public outreach program in the wings -- all of that minus its top communications executive.

Dale Carlson resigned from his post as chief communications officer last month, saying that he wanted to return to the private sector. Carlson joined the agency August 2006 after serving as vice president for corporate affairs with the Pacific (stock) Exchange in San Francisco for 18 years.

Replacing Carlson will be a difficult task. He is a consummate professional, one of the best that we have encountered over decades of experience with practitioners of public relations. He had a keen grasp of the needs of CIRM and the needs of the media and how to achieve a balance that was in the best interest of his employer.

The communications job at CIRM is particularly difficult because it is a unique enterprise with complex responsibilities and tasks. By comparison, most government agencies are straightforward, as are businesses. But CIRM combines both government and business, along with science, politics, morality, ethics, religion and much more. Finding someone who will be knowledgeable and comfortable with the scope of CIRM activities will take considerable work.

Already we have seen some predictable slippage in CIRM's PR functions, relatively minor at this point. But with the $85 million faculty awards due in December and the far-reaching $227 million in lab grants, the need for top notch help looms large.

CIRM is looking for an interim communications person as well as a permanent replacement with a salary range of $130,000 to $195,000. It will certainly need someone on board, whether an outside firm or person, come January when the lab grants are scheduled for approval by the Oversight Committee.

Also coming up in 2008 is a public outreach program, which the strategic plan says could run $4.5 million. Both incoming CIRM President Alan Trounson and interim President Richard Murphy have identified the public education effort as a major priority.

Murphy told CIRM directors last month that the agency is considering hiring an outside firm that would work with "an internal public information coordinator." Murphy said the agency will begin a search for a "firm that is strong in medical affairs and journalism and has good relationships with government."

CIRM is coming out of an unsettled period that was at least a partial result of failure to fill the vacant presidential spot in a prompt fashion. CIRM's chief scientific officer, Arlene Chiu, has left and others as well. It is fair to speculate that absent the disruption Carlson might still be at the agency.

Carlson was the third communications person/firm in the last three years at CIRM, not including a whopping $378,000 contract with the Edelman PR firm. That track record reflects poorly on the agency. We suspect it is partially linked to micromanagement problems. It also may have to do with internal access issues. If the new communications chief is to serve CIRM well, he or she must have complete access at the highest levels of the organization. Otherwise, policies become locked in place without full consideration of all their public ramifications.

Public relations is one of those tasks that seem simple on the surface and consequently sometimes generates poorly informed and self-serving dabbling. The Oversight Committee at one point even engaged in writing PR practices into its grant administration regulations in a way that protected the interests of grant recipients over the agency itself.

CIRM needs to resolve such issues if it is to achieve its public outreach and education goals.