There's a vaccine-related fracas brewing in Big Skepticism. Judging by some recent activity, Big Skepticism could be described as discouraging provaccine activism.
First, what is skepticism? I like Tim Farley's elevator speech, paired with this handy image:
“Skepticism is the intersection of science education and consumer protection. We help people learn from science to avoid spending their money on products and services that do not work.”
Wouldn't you think that pro-vaccine activism would fall right in that skeptic sweet spot? After all, the anti-vaccine rhetoric consists entirely of misinformation and outright pseudoscience.
The Backstory:
Phil Plait, who was the President of the James Randi Educational Foundation (JREF) from 2008 to 2010, has a long history of provaccine activism as a part of his science education activism. Plait earned a PhD in astronomy from U. Virginia and has a long history of both research and teaching. Plait left JREF to pursue decades-old public science-advocacy dreams. His replacement was DJ Grothe. Grothe, who had and has significant experience in organizing secular groups, is not a scientist and appears to have little academic training or exposure to science. Like James Randi, he is (or was) a professional magician.
Relative to what comes next, I want to point out that Plait (who was born in 1963) is old enough to have been exposed to wild measles and other vaccine-preventable diseases, while Grothe (who was born in 1973) probably was never exposed or experienced the personal or social costs of wide-spread vaccine-preventable diseases. I also want to point out that Plait has children, while as of 2013, Grothe had not yet become a parent.
For a while, it seemed like Big Skepticism was really committed to pro-vaccine, pro-public health activism. Back in the day, there was a woman-founded and run skeptical organization, called Women Thinking Free (WTF). In 2010, there was a major outbreak of pertussis (whooping cough) in California, affecting all ages. It became apparent that one source of disease may have been adults who were lacking a needed pertussis booster vaccine. It occurred to Elyse Anders and Jamie Bernstein of WTF that conventions such as DragonCon and The Amazing Meeting (TAM!, organized by the James Randi Educational Foundation, or JREF) would be excellent venues to host adult pertussis vaccination clinics.
The first clinic happened almost on the fly at Dragon*Con 2010, and vaccinated 203 people. The enterprise became known as Hug Me, I'm Vaccinated (http://hugmeimvaccinated.org/)
Other "Hug Me I'm Vaccinated!" adult pertussis booster clinics were held at major skeptic conferences like The Amazing Meeting! TAM (2011),, the Skepchicks and the Women Thinking Free Foundation hosted a FREE TDaP Vaccine Clinic at The Amazing Meeting!
In late 2010 or early 2011, women involved in WTF and SkepChick got a grant from the James Randi Educational Foundation (JREF) for [amount disputed] to do a vaccination uptake market-research study.
Elyse Anders announced the study April 26 2011 at Skepchick, via a press release from JREF, which read in part (emphasis added):
The joint project is an opinion survey, already underway, that will include data from hundreds of parents of young children by the time survey gathering is complete. The surveys are being collected by volunteers at events where parents may be especially vulnerable to anti-vaccine messages. When the research is completed next spring, the JREF will be make the results freely available to public health advocates to help inform their efforts to support childhood immunity.
“Our goal is to help save lives,” said JREF President D.J. Grothe. “Although the scientific community has done a good job refuting the misinformation of the most vocal anti-scientific anti-vaccine campaigners, we don’t really know what information is getting through to the parents who need it. We want to help parents get the unbiased information they need to know that they’re making the healthiest choice when they give their child immunity from dangerous diseases.”
I remember reading that and thinking that this would be an exciting and useful study, and sort of mentally noting that "Spring 2012" release date.
This is pretty important stuff. Nobody really knows why some parents are vaccine-hesitant; there may be a suite of reasons, and tailoring education or information to each set of reasons for vaccine hesitancy may persuade more parents to vaccinate fully, on time. We need a number of investigations of this nature to craft messages that will persuade vaccine-hesitant parents that vaccines are safe and effective.
And then, relative to the vaccine-hesitant-parents study, there was a long period of silence, from the April 26 2011 announcement of the study, until September 2013. In the meantime, in spring of April 2012, Elyse had a serious health setback (from which she recovered fully).
According to one of the project's authors, the data-gathering portion of the report, with fairly thorough analysis, was completed in mid-July 2012.
You see, the report was basically done by TAM 2012. Nevertheless, we wanted to have some third party experts read it first and make sure they agreed that our conclusions followed from our data. There was not time to do this by TAM, so after talking with the JREF, they agreed that we would publish it post-TAM but drum up some excitement about the project by publishing a 1 page summary of the survey results and have it available at the Women Thinking, inc table. This document was approved by both the JREF and Women Thinking, inc and was available to anyone who walked by our table to pick it up.
You can read the preview handout here, but I want to point out this one thing, and remind you that this preview handout was approved by JREF:
For procedural reasons that seem to stem from staff at JREF, the complete report was not published until 13 months later, that is, in September 2013.
At some point along the way, the "More than Men" web project was launched by the Women Thinking Free group and allies:
The More Than Men project is a campaign by the Women Thinking Free Foundation, a science and critical thinking outreach program focused on women and women’s issues. With a board of directors that is half men, we realize that white men are in a unique position to provide advocacy for underrepresented groups in almost every field. Men are not the problem, the problem is privilege, and we need to work together to make diversity happen.
Just prior to the September 2013 release of the vaccine survey report, Elyse Anders published D.J. Grothe threatening legal action against WTinc. I remember reading the post at the time and doing something that combined shaking my head and shrugging my shoulders. It had to do with an anecdote a heterosexual man (Sasha) published, having a not-entirely-sober encounter with DJ Grothe at TAM 2010, in which Grothe made a comment about non-consensual gay sex that he thought Sasha might "enjoy".
Then, on September 12, 2013, at SkepChick Jamie Bernstein published Summary of Vaccine Survey Results
"Women Thinking, inc has spent the last couple years working on a project funded by the JREF to survey parents who are fence-sitters on the issue of vaccinating their children. The project is a kind of market survey to learn which arguments these parents find most persuasive in convincing them that vaccinating their children is the right choice."
The final report was eventually released via an undated press release from JREF.
http://www.randi.org/site/index.php/jref-news/2212-opinion-survey-by-jref-and-women-thinking-free-foundation-supports-childhood-immunization.html.
I downloaded the study and continued to share it, and really thought no more about the year-long delay. Things happen.
Then, on April 23, 2014, I saw a facebook post from Elyse that disturbed me.
If anyone still supports the JREF knowning that DJ Grothe undermines groundbreaking vaccine activism out of spite, skepticism is dead.
It seems that a physician wanted to do a vaccine clinic at a conference, Hug Me I'm Vaccinated-style, and was unable to contact either Women Thinking Free / Hug Me I'm Vaccinated via telephone, as those organizations had eliminated their telphone lines when the organizations ran low on resources.
Said physician eventually contacted DJ Grothe at JREF. Now, it's not exactly clear what the physician asked Mr. Grothe. At any rate, the impression was left that Grothe was unhelpful to the physician, and did not give him contact information for either Elyse Anders or Jamie Bernstein. The physician was apparently left with the impression that JREF knew nothing about any vaccination clinics or who had organized them.
Whatever Mr. Grothe said, he and JREF missed an opportunity to advance JREF's reputation for encouraging vaccine education and vaccine uptake.
The physician eventually got in contact with Jamie. Here is her account:
Yah, I can corroborate what Elyse said. The guy who was trying to get in touch with us actually found a business card I gave him a couple years ago and called me up today and I talked to him for awhile giving advice for the vaccine clinic he wants to do.
He told me he had spoken with DJ Grothe but DJ told him he had no idea who was involved with the past TAM vax clinics and had no idea how to get ahold of us. Luckily he found my business card and also made his way to Skepchick where he sent us a message via the contact form.
I wonder how many other people may have asked DJ the same question and then given up when he said he has no idea who we are.
I put up an entry about all this at Facebook page, AntiVaccine Wall of Shame: https://www.facebook.com/groups/AVWOS/permalink/390177117786944/
Subsequently I received a private Facebook message from DJ Grothe, in which he claimed not to have contact information for either Elyse Anders or Jamie Bernstein, despite the years of close contact between JREF and both women. He also accused them of "lying" and misrepresented other matters of fact.
The whole mess makes JREF look either incompetent or petty, and surely not interested in actual public health advocacy.
Sources:
- December 7, 2009, Phil Plait at Discover I am leaving the JREF Presidency
- September 22, 2010, Masala Skeptic at Skepchick: Beyond Anti-Vax: The Pertussis Problem (A Dragon*Con tale)
- April 26, 2011 Elyse Anders at Skepchick JREF and Me: Helping to Save the World
- July 12, 2011, Amy Roth, Skepchick Helping To Make the World Safer and Whooping Cough; A Case Study
- July, 2011, Tim Farley, My Skeptic Elevator Pitch
- July, 2012 Women Thinking, inc Vaccine Survey Report Preview
- August 10, 2013, Sasha Pixlee at More than Men DJ and Me
- September 10, 2013, Elyse Anders at SkepChick D.J. Grothe threatening legal action against WTinc
- September 12, 2013, Jamie Bernstein at SkepChick, Summary of Vaccine Survey Results
- Undated Press Release, James Randy Educational Foundation, Opinion Survey by JREF and Women Thinking Free Foundation Supports Childhood Immunization
- April 24, 2014 Elyse Anders, Facebook Post: https://www.facebook.com/ElyseMofoAnders/posts/10152400064024104?stream_ref=10
I've known D.J. for a long time, and I feel you have mis characterized him in this. He is very pro-vaccine, What does the fact that he was born in the '70s, or that he isn't a scientist, or that he doesn't have kids (yet) have to do with anything? Have you spoken to him to ask his side? There is so much speculation and hear-say, I don't know why you posted this.
Posted by: Laurie | Friday, April 25, 2014 at 05:51 PM