The Danger of Vanoli's Vaccine Fabrication

I don’t even know where to start.

From a public health viewpoint, this argument might not hold as much water as the Wakefield research that suggested a link between children’s vaccinations, but it is still a concern.  Because of the society in which we live, LGBT individuals face discrimination, violence, and misunderstanding, and the lack of knowledge surrounding the environmental and hereditary components of an LGBT identity, parents who are led to believe that the mercury in vaccines causes homosexuality may be reluctant to vaccinate their children.  In a country that is heavily religious, and in that sense, may be more morally and politically opposed to LGBT rights, this argument may hold more sway than in a country where there is an active push for LGBT rights and ethical treatment, such as the United States.

Let’s look at the issue of mercury poisoning.  According to faculty at the University of Washington’s Neuroscience Department, mercury exposure in childhood can damage primarily the visual cortex, the cerebellum, and the dorsal root ganglia.  Obviously, the visual cortex deals with vision, the cerebellum coordinates movement, and the dorsal root ganglia transmit sensory information to the brain.   Granted, a damaged visual cortex would make it difficult to read the signs outside a gay strip club, which might result in an embarrassing blunder, but these brain areas could not otherwise predispose someone to "become gay".  Nowhere does it say that mercury poisoning damages the frontal lobes, the “seat” of personality and decision making.  Furthermore, Vanoli fails to detail the areas the mercury would affect; stating only that the mercury damages the “formation of personality”.  From my perspective, minimizing something as central to identity as sexual orientation or gender identity to a personality trait is insensitive as best, and dehumanizing at worst. 

Furthermore, describing homosexuality as “microform of autism” is overwhelmingly offensive and just plain wrong.  It’s wrong from an ethical perspective to compare a neuropsychological condition to an aspect of gender and sexual identity that has been determined to be not pathological by the APA.  This comparison reflects Vanoli’s insensitivity but also his lack of psychological knowledge.  Also, we must consider Vanoli’s inherent biases, especially when he is described as a “scientist, journalist, and opponent of vaccines.  I did a little digging on Vanoli, and I found that in Italy, he is considered more of an “infamous” scientist (at least, that’s what my translation said), who is known for producing fringe theories.  An analog would be the researchers who deny the causal link between HIV and AIDS.

I think this topic connects nicely to some of my earlier posts about representing both sides of an issue.  Certainly, this is one of those instances where representing both sides of an issue is not “fair” to the reader.  This fringe theory that is driven by misunderstanding, fear, and a desire to keep a minority population marginalized and powerless has no valid place in the research about vaccine risks, genetics, or dangers of environmental toxin exposure in children. 

It's not just the "Fox News Devil": Fighting Bias with Objectivity and Respect for the Reader

            I think at an idea central to this concept is the confirmation bias.  When people look at a source like Fox News (or MSNBC, or the Huffington Post, for that matter), we are looking for information that confirms our current feelings and beliefs.  I would assume that many Fox News viewers do not hold liberal views about policy, the environment, government, or social issues, and that when they see a story on fox News that supports their position, they are more likely to believe it than someone with more moderate views.  I think the idea of “fair and balanced” is more of a spin tactic than a true statement about the nature of Fox News (or any news outlet for that matter)’s reporting.  I think it is tough for a news outlet, whose primary directive is to retain viewers and make money through advertisement and viewership, to actively challenge the viewpoints of its faithful.  When people’s beliefs are challenged, they may be more likely to change the channel, which leads to lost revenue.  Balancing budgets does not make for balanced news, and it’s hardly fair to the viewer when a network’s profit margin is placed above the potential benefit of trying to be as objective as possible.  Unfortunately, anyone who relies exclusively on a major news network for their information is going to be misinformed in some way, whether it’s the fault of simple omissions or getting the news from a source that wants to influence public belief to its agenda. 

            Challenging previously held beliefs is a source of cognitive dissonance, and we know very well that cognitive dissonance is uncomfortable.  But, that’s where the learning happens: at the end of our comfort zones. When our previous beliefs do not “line up” with new information, it is sometimes difficult for us to process.  When our beliefs are challenged, it sometimes sets off a train of re-evaluation; “Does my change of belief on this subject affect my other ideas about the world?”        

            An example could be challenging the belief that climate change is not a potentially disastrous global problem.  Perhaps if someone were to challenge that belief, they would be able to challenge others as well.  Challenging the beliefs about climate change could lead people to challenge and perhaps change their ideas about leading sustainable lives, driving their cars less or carpooling, using more energy efficient appliances, and perhaps even joining advocacy groups to increase awareness in their neighborhoods.

            The willingness to challenge those long held beliefs is the key, and this brings me back to one of my first posts.  When individuals are willing to challenge their previous beliefs, they often adopt a new belief in its place.  Our job as science writers is to make science and information accessible to those who wish to challenge their views or replace antiquated ones.  When we make the information accessible and clear in a way that doesn’t alienate or belittle those with different views, we are ensuring that individuals who wish to change their views will feel like they are accessing objective, meaningful information.  We need to make the information available to those people who want to change, and it is our responsibility to be the most objective writers we possibly can to ensure that our readers (and potential “converts”) are getting the most unbiased information we can give. 

Is "balanced" always "fair"?

            As we discussed balance during the last class, I was intrigued by Dr. Edwards’ idea of the difference between “balanced” and “fair”.  It is “fair” to our readers to be unconditionally balanced in reporting?  Is it fair to report two perspectives on a hot-button issue that affects the health of our readers?  I really do not think that it is fair to the readers to represent the side of research that has not been supported by numerous studies.  What if we were to represent Freud’s viewpoints along with newer, more supported research about interpersonal interaction?  The problem with representing these “fringe” or outdated theories as truth is that it presents the risk that individuals with limited science knowledge will accept that fringe perspective as equally valid to the perspective that has been supported by countless studies. 

            To illustrate the dangers or overvaluing these fringe beliefs, I would like to present a hypothetical situation.  Let’s take a man who finished high school but has not attended an undergraduate institution (not to say that individuals who choose not to get a bachelor’s degree are inferior, but, depending upon their interests and occupation, they may have fewer opportunities to access scientific material or dialogue).  Let’s say that he has a child who is experiencing gastrointestinal distress.  He goes to his trusty computer and types in “stomach problems and children”.  And then, let’s say he comes across an article that says his child might have a mild case of food poisoning, or his child could have the beginning stages of autism.  Both of these causes are linked to gastrointestinal distress, but the claims of gastrointestinal distress being linked to autism are highly debatable.  If this possibility were presented with no caveat, this father might immediately schedule long and expensive tests with a pediatric specialist, which could break the bank if not covered by insurance. 

            As science writers, we need to be careful how we’re representing the information.  It’s okay to mention the “other side” of an issue, particularly if the other side has some credence.  For example, it would be completely irresponsible to represent intelligence as completely genetically heritable (nature) without bringing up the environmental factors that contribute to the development of intelligence (nurture).  When faced with a situation like this, science writers should certainly represent the other view.  However, when representing the other view would confuse readers or cloud their understanding of the issue, one must tread very carefully.  A balanced approach is not always fair to the reader, and when science writers are aware that reporting the other side of their issue may jeopardize their obligation to be fair to their readers, they must write in a way that is sensitive to the needs of the readers.  It is important to still challenge the reader and inspire him or her to think deeply, but we also need to be aware that treating all views equally is irresponsible and can leave the reader more confused than when he or she started the piece. 

Stand up and say it: YOU are a scientist.

                Drawing a scientist might have gone differently for me than it went for most people.  I had talked earlier in the day to one of the students who spent her winter break in Costa Rica with the biology department, and consequently the idea of scientists going out into the world to test hypotheses, chase animals, and collect data was fresh in my mind when I drew my two scientists.  The first drawing features my friend who spent time in Costa Rica.  She’s outside at night with a net, looking to catch some bats.  She is wearing some outdoorsy gear: shorts, a t-shirt, and hiking boots, and is pointing excitedly at some sort of horribly mutated bat (the victim of my sub-par art skills).   This drawing of my friend speaks to some of my attitudes about science and who can “do science”.  I think that scientific aptitude is not limited by a degree, and is not determined by the letters preceding one’s name.  My friend is one of the most scientifically literate, inquisitive people out there, and I think that drawing her on her Costa Rica trip was my way of voicing that idea.

                                     This bat may or may not have been exposed to radiation, causing its wings to took strikingly like muscle-y arms. 

            I drew a second scientist because I wanted to draw a more “traditional” scientist.  This is also an illustration from that Costa Rica trip.  Yes, that is Dr. Robert Dawley looking at an iguana and in danger of falling on a cactus (which, I was told, he did fall on after looking at the iguana).  This drawing of a scientist might look a little bit more like the “traditional” idea of what a scientist might be: he has curly hair, glasses, he might be a little clumsy (as suggested by the cactus), and is absorbed in his work.  But, he’s also out in the hot Costa Rican sun and teaching others about his scientific focus, so I think that this drawing of a scientist still differs from the norm. 

Dr. Dawley and an iguana.  He looks like our more traditional conception of a scientist because 

his hair is, in reality, a little crazy.  I wish you could see the iguana in greater detail, because it is a triumph. 

            My good friend Will also drew a scientist for me.  His drawing was astoundingly detailed, and much better than my awful “artwork”.  His drawing featured a man in his mid-thirties standing in a lab, holding an Erlenmeyer Flask, looking thoughtful and surrounded by microscopes, machines, and chemicals.  The scientist is young and handsome-looking, which defies conventional beliefs about scientists, but he is also looking aloof and pensive, which I think reflects some more “traditional” ideas about science.  When I asked Will what the different machines he had drawn were, he said “I’m really not sure, I thought it looked cool.”  I think that Will’s drawing speaks to some attitudes that we hold about science and scientists: that science is “cool”, but we’re not exactly sure about the science and the mechanics involved.   When most people think about scientists, they might be thinking of a social conception of what a scientist does and what he or she looks like.  Will is a humanities major, and so has had one science class in his time here.  He has not had that much exposure to scientists at Ursinus, and I think this has caused him to lean more heavily on society’s conception of what a scientist might look like.  

            I think that’s the crux of the problem with society’s mistrust of science: a lack of exposure.  We have trouble seeing scientists as regular people who put their pants on one leg at a time (until someone invents a contraption to streamline pants wearing, that is), because we don’t see much of scientists in the public sphere.  When we hear about a scientific discovery, we tend to hear more about the discovery itself and what it means than about the scientists behind it.  For example, many people are talking about the baby that a research team from John’s Hopkins, the University of Mississippi, and UMass that may have cured a baby infected with HIV.  Unfortunately, people don’t take the time to learn that Dr. Deborah Persaud, the lead author of the paper is a working mom with kids just like many women in America and around the globe.  She has to worry about whose day it is to pick the kids up at daycare (in fact, according to a news article, she once almost missed a party given in her honor because she was convinced it was her day to pick up her toddlers from daycare), she has to do her taxes, and she reads gossip magazines.

            We as a nation need to make the notion that scientists are regular people more accessible to everyone.  By perpetuating the stereotype that scientists (and by extension, science) are intimidating, we are making it more difficult for young people to overcome their reservations about going into the sciences.  As science journalists, it should be our responsibility to make sure that science and scientists are presented as interesting and accessible rather than distant, unfeeling, and cold.  I would strive to do this by finding relatable personal characteristics for the scientists I interview for writing.  I want to present not only the science, but the human behind that science; maybe they tell a good joke or have a great collection of coffee mugs or you can hear the excitement in their voice as they talk about their research.  The more characteristics that readers can identify with, the greater the chance that they will pursue their interests further and consider science as something within reach instead of something reserved for those with an advanced degree. 

Understanding that "Gut Feeling"

         I think that there’s definitely something to be said for intuition.  When presented in a dry or unappealing way, science can be, as Colbert says, “all fact and no heart”.  It’s sometimes tough to connect with something when you feel it is not accessible or compelling, especially when making important decisions—whether about health, diet, mental state, or purchasing. When we have gaps in our knowledge about a concept related to science, it’s often easier to go with our “gut feeling” rather than spend time researching, evaluating, and interpreting information with which we’re not familiar. We often rely on the interpretations of doctors, mental health professionals, journalists, and yes, even celebrities when something is frightening or foreign to us.  Our propensity to allow others to interpret scientific findings can be helpful, but also presents the danger of receiving biased information. Bias, whether intentional (and, consequently well-intentioned or ill intentioned) or unintentional, is impossible to avoid.  When we process information, we bring out past experiences, beliefs, and relevant knowledge to our interpretation.  This is almost impossible to avoid in some degree. 

            That being said, I think there’s a difference between being sensitive to your audience and understanding bias versus reporting something that is “truthy”.  I think that science writers can report a story is a manner that is sensitive and has a combination of “heart and brain” without omitting or overly biasing the material.  Sometimes, it is the science writers’ job to interpret sensitive or confusing material and we must take it as our responsibility to present the material in the clearest and most accessible way, while still preserving most of the science behind a concept.  I think that it might be appropriate at times to insert a point of view into a piece, but there is a difference between a point of view and “truthiness”.  Substituting “truthiness” for truth in the media can prevent individuals, corporations, and policy makers from accessing the most meaningful and scientifically sound material, which can affect the decisions that entities of all levels (individual, corporate, industrial, etc) make.  Reporting the “truthy” story may lead to misinformation and misconception, so as science writers, we must walk a fine line between being sensitive to our readers’ needs and aware of bias and reporting material that is less than truthful.  It is important to ensure that we’re reporting science news with the most attention to integrity and a keen eye towards avoiding the pitfalls of “truthiness”.  

The Fight Against Misinformation, or, "How to Eat a Monstrous Whale"

            I think that the tendency of vaccine-autism advocates to believe Jenny McCarthy over scientific evidence speaks to a source-confirmation bias.  When individuals are having their beliefs reinforced (whether they are credible or built upon misinformation), they are more likely to ascribe to beliefs that may be scientifically unsound.  The idea that other people believe the same thing is powerful, and in the case of vaccine-autism advocates, there are hundreds of support groups, Facebook pages, lobbyists, politicians, and celebrities trumpeting the link between vaccines and autism.  This indicates to me that science writers have a formidable challenge: to change the minds of vaccine-advocates, who have influential groups (and a former Playmate) telling them that they are correct in their thinking.  The only way to approach this is with measured, meaningful steps, sort of like the way Melinda Mae prepared to eat the whale in the Shel Silverstein poem:

            As a science writer, the vaccine-autism advocates and others who may need to increase their scientific literacy for their own (and others’) health present us with a challenge.  With regard to something as important as vaccinating a child (and, increasingly, preserving the “herd immunity” for those who are unable to be vaccinated due to outside circumstances), science writers need to “up the game”.  I’m not saying that we need to be shoving our truth in the faces of the vaccine-autism advocates, much to the contrary.  I think that science writers need to seriously evaluate how we approach populations who cling to misinformation in spite of science.

           

            In the Lewandosky journal article, the authors talk a good bit about recommendations for decreasing the effects of misinformation.  Integral in dispelling misinformation and replacing these misconceptions with more scientifically sound ideas is the idea of discussion.  When it comes to creating lasting and meaningful change in the minds of the public, persuasion is not a monologue.  It is so important to discuss the reasons why an idea is based in misinformation, keeping in mind the importance of sensitivity.  An individual who believes in a scientifically unsound idea is still entitled to those beliefs, and attacking those beliefs may feel like an attack on the person himself.  It is essential to approach the individual in a respectful way that seeks to dissect the differences between fact and fiction in an accessible way (think of that “incomprehensible” Lancet retraction with the autism findings).  This is a “sit-down chat”, as my father says, not an instance where we lob information at the individual and assume that they will want to scrape our omnipotent knowledge off of the floor once we’re gone.   

            In order to create this respectful discourse, it is essential that we work to understand the source of the misinformation. We need to put ourselves in the shoes of the parents of a non-verbal autistic child, who are looking for answers as to what is causing their child’s behavior.  Having a non-neurotypical child is a challenge for many parents: it can cause relationship stress, exhaustion, financial woes, and, in some cases, can cause parents to sacrifice friends, careers, and dreams for the future.  These parents (and those who share their concerns) are victims of the human tendency to seek patterns and look for answers.  While science writers can illuminate that vaccines do not cause autism, we need to be careful in the way that we challenge the beliefs of others.  If we take away a cause and a belief system, we should be conscious of what kind of effects this might have on parents and advocates.

            Consequently, we must replace this misinformation with powerful, scientifically-valid information to which those who espouse a connection between vaccines and autism can connect.  The Lewandosky article discussed how important it is to replace the misinformation with fact that can fill the gaps in the narrative caused by the rejection of misinformation. In this case, science writers could introduce the increased awareness among clinicians, the expanded spectrum for autism and regressive developmental disorders, other environmental factors, and the possible genetic link discussed in the Wired article as explanations for where autism comes from and why diagnoses are on the rise.

           

            Finally, I believe that it is science’s job to foster a healthy skepticism in the population. Science writers can contribute to this by asking their readers to question the sources of their information (“who is writing?” “with whom are they associated?” “what kind of study was performed?” “what conclusions were reached?”).  Additionally, by writing compelling articles and making other sources of information on the topics accessible to our readers, we are increasing the amount that an individual can learn about the topic.  Additionally, we can be careful not to sensationalize or overextend findings before they have been found to be scientifically valid.  As one of the articles from the reading so eloquently put it, “you cannot un-ring a bell”.  Before sounding the alarm, science journalists need to consider the ripple effect of their announcements. 

          

          Someday, I hope that we can look back on the vaccine-autism connection the same way that we look at the geocentric hypothesis or the Four Humor theory of disease today.  Like these outdated ideas, a push of discovery to replace misinformation with new information is necessary, and science writers must be prepared to deliver this information in a sensitive and accessible way to the public.  

We'll get there, someday. 

The Great Science Giveaway

                First of all, I want to take some blog space to say how utterly cool Dr. Hirsch-Pasek is.  She seems like a pretty incomparable human, and Ursinus was so fortunate to have her come to talk to us.  I immensely enjoyed her talk, and wish that she would come and hang out more often!

                One of the most important things that I took from Dr. Hirsch-Pasek’s talk is that it is of utmost importance to make scientific findings (and the concrete benefits from those scientific findings) available to the general public. The best way that she did this (in my humble opinion) was to take her research findings about learning through play and turn those findings into the basis for the Ultimate Block Party event that is now traveling nationally and internationally.  This is one of the ways that science can work to “give” itself to the general population: by taking research findings and translating them into actual policy changes, opportunities to improve the general public’s lives, or a giant Block Party in Central Park.  One of the best ways to give science away is to give the general public direct access to the positive changes that science can create.  However, this is not enough.  People cannot just eat out of the hand of the benevolent scientist, unaware of the science and theory behind the policies, disease or behavioral interventions, or educational legislation.  An understanding of the science behind the everyday improvements is necessary—this is where the science writer comes in.  It is the science writer’s job to make the science behind the Ultimate Block party interesting and compelling, because (unfortunately!) Dr. Hirsch-Pasek cannot be everywhere at once. 

                Another way to “give away” science involves the idea of humility and a desire to help others for greater good.  I think that the notion of “giving science away” has a lot to do with setting aside ego and desire for recognition.  When an individual places the interests of others above his own, it creates a community and a more egalitarian relationship.  Think about every single research project that an Ursinus student does: when he or she ventures off of the map a little, toward that shadowy place of foreign research journals or “niche-y” subjects, toward the place where Myrin’s subscription does not extend, there is a wall of paid subscription access.  Why, if I am making a good-faith effort to expand my scientific (or humanities or social science or music) knowledge, is my access denied because of my lack of subscription to a journal?  These kinds of partitions between the knowledge and the knowledge-seeker are an enormous roadblock to seeking knowledge.  I think that the problem of the unavailability of meaningful science writing is compounded by the unavailability of general scholarly science materials.  Even if the general public wanted to access science materials, these kinds of elitist roadblocks would prevent them from doing so without a subscription. While I think that scientists need to “give away” their science, that is not enough.  They need to be the ones who are involved in bringing it to the people.  Scientists and scientific disciplines must work to change the public perception of science as an elitist and “scary”.  It is not enough to “open the doors” to science; scientists and science writers should make the general public want to step over the threshold and enter a world where they can challenge themselves and discover a different way of thinking.  As a science writer, I think it is supremely important to give science away—to make science exciting and engaging and to encourage people to pursue their scientific interests further.  But, if institutions, academic journals, and individual scientists are not going to do their part in “The Great Science Giveaway”, it will be a long road.

On a related note, one of my favorite ways that some top universities are giving science away (and other disciplines!) is through access to their course materials, called Open Courseware.  Check out MIT’s open courseware offerings here: http://ocw.mit.edu/courses/find-by-topic/