There has been a consensus among scientists for many years that there is little evidence that vaccines cause autism, but that has not stopped many in the general public to continue to believe this idea. In some parts of the US and UK there are still significant numbers of parents who are refusing to have their children vaccinated.
We are still learning how people of using the Internet to maintain ideas that have been discredited in various sources. There is much we need to learn here.
Here are three interesting commentaries that deserve careful consideration as we think about the long tail of misinformation.
Seth Mnookin: The Panic Virus (On the Media interview)-- book--The Panic Virus
Newsweek article-- Autism and the Affluent
Science Friday Paul Offit -interview
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Sunday, January 09, 2011
Sunday, December 19, 2010
Blogging for Huffington Post on Divorce
For the past month or so I have been writing for the Huffington Post Divorce page. This work gives a chance to return to my primary professional work which is as a educator regarding issues related to families.
For several years I have admonished and cajoled colleagues about the need for scientists and teachers to use the web as a platform for teaching. (See my comments about the importance of scientists and professionals blogging about the link between autism and vaccines.) When I was approached by the editors at the Huffington Post about being a blogger for their newly launching web page on divorce , I knew I had to do this. I have now posted four posts (about one per week). (See my Huffington Posts work here: http://www.huffingtonpost.com/robert-hughes )
My first post on the role of religion in shaping attitudes about divorce got the most (151) comments (both thoughtful and odd). My most recent post on the role of conflict in preventing divorce got the smallest number of comments (2). It is hard to know why one post gets more comments than others.
I will continue to try this medium. Here I will describe my various reactions to "teaching" in the Huffington Post.
For several years I have admonished and cajoled colleagues about the need for scientists and teachers to use the web as a platform for teaching. (See my comments about the importance of scientists and professionals blogging about the link between autism and vaccines.) When I was approached by the editors at the Huffington Post about being a blogger for their newly launching web page on divorce , I knew I had to do this. I have now posted four posts (about one per week). (See my Huffington Posts work here: http://www.huffingtonpost.com/robert-hughes )
My first post on the role of religion in shaping attitudes about divorce got the most (151) comments (both thoughtful and odd). My most recent post on the role of conflict in preventing divorce got the smallest number of comments (2). It is hard to know why one post gets more comments than others.
I will continue to try this medium. Here I will describe my various reactions to "teaching" in the Huffington Post.
Monday, March 30, 2009
Adding "The Public Mind" to Teaching and Learning
In order to engage in teaching it is always important to understand student's knowledge and understanding of an issue. Indeed a fundamental aspect of excellent teaching is the ability of the instructor to bridge the student's understanding and new information.
As teaching and learning has moved online I think this process has become more complicated and also more important, especially in the case of topics that are in the public discussion. Here is an example of what I mean:
There is much discussion about the role that vaccines may play in the cause of autism. (See some my other comments on this discussion.) This is an topic that is a major issue for health educators, the medical community and for parents of young children. There is some evidence that an increasing number of parents are choosing not to have their children vaccinated as a result of the information available on this topic. (Note: See Google Trends on this topic.)
My simple insight is that in order to effectively "teach" about this topic on the web, it is important to understand the way this debate is framed online, the participants in the debate, the passions in this discussion and the challenges faced by bridging parent's views of this situation and the scientific evidence. This is what I have been referring to as "Knowing the Public Mind." I don't know if this is a good term or if others have a better term for this idea. At one level this is the same issue faced by all instructors who are trying to teach, but the web is a more complex instructional environment in the sense that at a minimum there are more voices and in particular unlike the enclosed classroom in which the teacher's voice is often respected, teachers on the web have more difficulty in establishing credibility, web credibility is often quite different that classroom credibility.
In an earlier post, I reviewed the ideas of Mishra and Koehler regarding their model of integrating content, teaching and technology. I would suggest that successful online teaching must also include this fourth dimension of "understanding the public mind."
As teaching and learning has moved online I think this process has become more complicated and also more important, especially in the case of topics that are in the public discussion. Here is an example of what I mean:
There is much discussion about the role that vaccines may play in the cause of autism. (See some my other comments on this discussion.) This is an topic that is a major issue for health educators, the medical community and for parents of young children. There is some evidence that an increasing number of parents are choosing not to have their children vaccinated as a result of the information available on this topic. (Note: See Google Trends on this topic.)
My simple insight is that in order to effectively "teach" about this topic on the web, it is important to understand the way this debate is framed online, the participants in the debate, the passions in this discussion and the challenges faced by bridging parent's views of this situation and the scientific evidence. This is what I have been referring to as "Knowing the Public Mind." I don't know if this is a good term or if others have a better term for this idea. At one level this is the same issue faced by all instructors who are trying to teach, but the web is a more complex instructional environment in the sense that at a minimum there are more voices and in particular unlike the enclosed classroom in which the teacher's voice is often respected, teachers on the web have more difficulty in establishing credibility, web credibility is often quite different that classroom credibility.
In an earlier post, I reviewed the ideas of Mishra and Koehler regarding their model of integrating content, teaching and technology. I would suggest that successful online teaching must also include this fourth dimension of "understanding the public mind."
Sunday, March 29, 2009
Tuesday, March 17, 2009
Do People Trust Scientists?
As a result of thinking about the criticism of scientists and science in regards to the autism-vaccine debate, I began to wonder how much do people trust scientists and professors.
There are a couple of recent polls that suggest despite the criticism that we often hear about scientists and science, people still trust them alot. The most recent poll I could find was conducted in 2008 in England. In these results, teachers are the 2nd most trusted profession, professors are 4th and scientists are 6th out of 16 categories of professions. In 2008, 87% of the population agreed that they would "generally trust them to tell the truth." 79% of people trusted professors and 72% of people trusted scientists.
In 2006 the Harris poll conducted a similar survey of Americans. In this case 22 professions were rated on trustworthiness. Teachers were rated 2nd with 83% saying they were trusted, scientists were rated 3rd with 77% trusting them, and professors were rated 5th with 75% trusting them. It is worth noting that between 1998 and 2006 all three groups lost a small amount of people trust-- about 2-3%.
These findings suggest that the public in England and the United States put a lot of trust in these professions. Despite the criticism that were sometimes here there appears to be considerable respect for the professionals. Those of us who practice these professions should treat this trust with care.
There are a couple of recent polls that suggest despite the criticism that we often hear about scientists and science, people still trust them alot. The most recent poll I could find was conducted in 2008 in England. In these results, teachers are the 2nd most trusted profession, professors are 4th and scientists are 6th out of 16 categories of professions. In 2008, 87% of the population agreed that they would "generally trust them to tell the truth." 79% of people trusted professors and 72% of people trusted scientists.
In 2006 the Harris poll conducted a similar survey of Americans. In this case 22 professions were rated on trustworthiness. Teachers were rated 2nd with 83% saying they were trusted, scientists were rated 3rd with 77% trusting them, and professors were rated 5th with 75% trusting them. It is worth noting that between 1998 and 2006 all three groups lost a small amount of people trust-- about 2-3%.
These findings suggest that the public in England and the United States put a lot of trust in these professions. Despite the criticism that were sometimes here there appears to be considerable respect for the professionals. Those of us who practice these professions should treat this trust with care.
Monday, March 02, 2009
Autism-Vaccines: Developing Scientific Thinking
I periodically review the debate over the discussion about whether vaccines cause autism. This past week there was a major report in Newsweek on the scientific evidence that was titled, Anatomy of a Scare. Likewise, there were new full-page ad in many major newspapers that were sponsored by Generation Rescue that continues to assert that vaccines are connected to neurological disorders.
My interest is in what we can learn as scientists about communicating science to the public. Especially now that news and ideas can be spread via the web it is critical to understand how to information is spread and how to effectively communicate complicated scientific stories. Clearly, there will always be some people who will prefer to believe in conspiracies and fail to examine any reasons, but there are still others who will engage in thoughtful examination of the evidence. So how can scientists present that evidence most effectively and how do we encourage deeper scientific thinking about such issues.
First, it is important to hear what ordinary people are thinking about these issues. Some of the comments and thinking is confused, but some of it is also thoughtful. Here are posts in response to an NBC report that was generally unfavorable in regards to link between vaccines and autism.
The CDC has taken a lot of criticism by those who believe that the government is trying to cover up scientific facts. I continue to watch how they are using the web to present the evidence regarding these studies. There is a very interesting section about an ongoing Study to Explore Early Development (SEED) that provides information for the public about an investigation of early development and efforts to explore a variety of links to developmental problems such as autism. These FAQs about the study seem like a good way to engage people in understanding how the scientific study is being conducted and the likely outcomes of this study.
One positive consequence of the media attention to the autism-vaccine connection is that there may be more efforts to provide more detailed information about the research rather than just the findings. This seems like one good way of engaging people in a more effective way of thinking about science. Likewise, the CDC website includes a lot of links to new studies that are exploring issues surrounding the autism-vaccine issue so that the public can easily find the latest research. This too seems useful and important.
A missing part would seem to me to be a moderated discussion of these issues that would seek to answer questions. There are some challenges in doing this because it is likely to be overtaken by those with strong opinions, but this type of engagement with the public may be important to undertake.
My interest is in what we can learn as scientists about communicating science to the public. Especially now that news and ideas can be spread via the web it is critical to understand how to information is spread and how to effectively communicate complicated scientific stories. Clearly, there will always be some people who will prefer to believe in conspiracies and fail to examine any reasons, but there are still others who will engage in thoughtful examination of the evidence. So how can scientists present that evidence most effectively and how do we encourage deeper scientific thinking about such issues.
First, it is important to hear what ordinary people are thinking about these issues. Some of the comments and thinking is confused, but some of it is also thoughtful. Here are posts in response to an NBC report that was generally unfavorable in regards to link between vaccines and autism.
The CDC has taken a lot of criticism by those who believe that the government is trying to cover up scientific facts. I continue to watch how they are using the web to present the evidence regarding these studies. There is a very interesting section about an ongoing Study to Explore Early Development (SEED) that provides information for the public about an investigation of early development and efforts to explore a variety of links to developmental problems such as autism. These FAQs about the study seem like a good way to engage people in understanding how the scientific study is being conducted and the likely outcomes of this study.
One positive consequence of the media attention to the autism-vaccine connection is that there may be more efforts to provide more detailed information about the research rather than just the findings. This seems like one good way of engaging people in a more effective way of thinking about science. Likewise, the CDC website includes a lot of links to new studies that are exploring issues surrounding the autism-vaccine issue so that the public can easily find the latest research. This too seems useful and important.
A missing part would seem to me to be a moderated discussion of these issues that would seek to answer questions. There are some challenges in doing this because it is likely to be overtaken by those with strong opinions, but this type of engagement with the public may be important to undertake.
Saturday, June 07, 2008
Open Scholarship and Education
Librarians and other scholars who are interested in the impact of scientific research have been exploring the degree to which scientific papers published in open access journals have an impact on the field.
The OpenCit project tracks and synthesizes this literature. Overall, they report,
Peter Suber has written a thoughtful summary of the state of open access publishing in science concluding:
The OpenCit project tracks and synthesizes this literature. Overall, they report,
"Recent studies have begun to show that open access increases impact. More studies and more substantial investigations are needed to confirm the effect, although a simple example demonstrates the effect."For more details on this issue see this summary of the ongoing research studies that are exploring the impact of open access scholarship on scientific impact.
Peter Suber has written a thoughtful summary of the state of open access publishing in science concluding:
"While OA [open access] is demonstrably superior for impact, conventional publication is superior for prestige, at least during the current transition period. But there needn’t be a trade-off. We can combine OA and prestige in the same ways in which we combine OA and peer review: a growing number of high-prestige peer-reviewed journals are already OA, and most of the rest already allow their authors to deposit their peer-reviewed manuscript in an OA repository."Nevertheless, the big challenge in opening science is not just opening the "scientific results" to the larger world, but opening up the laboratories and studies themselves. As I have noted in the ongoing debate about "the effect of vaccines on autism" there are powerful opportunities for scientists to contribute to the discussion, but in order to participate effectively we are going to have to move from an expert mode to a participatory mode.
Sunday, May 18, 2008
Reassurance from Experts Won't Work
The most common sentence from scientists or about science I have found in news articles about the autism-vaccine connection goes like this:
"Studies repeatedly discount any link between thimersol (or MMR or vaccines) and autism."
This is generally right. The overall scientific evidence has not demonstrated that there is a connection between vaccines (or any component of vaccines) and autism. Yet clearly this has not stopped the debate or convinced most parents of children with autism.
So I keep asking, why not? In part, this hypothesis is kept alive by a variety of people who are effectively using the media to focus on this issue.
But I also think that scientists have not engaged in the pubic debate effectively by providing the evidence for why this in not the case. We keep repeating the conclusions as if when "experts" (at least from the scientific community) speak that is the final word. On the other hand, parents of autistic children, another kind of "expert" continue to voice their views that their personal experience is otherwise. That is, there is a connection between the timing of their children's vaccine and the onset of autistic symptoms.
Scientists must find a way to talk about the lack of convincing evidence for a vaccine to autism link, yet validate parents' experiences that there seems to be a relationship. Tough assignment, but necessary.
Scientists will be much more convincing in the long-run if they acknowledge the importance of generating various hypotheses (like vaccines as a cause) and the careful exploration of these hypotheses and the often mixed evidence that emerges.
"Studies repeatedly discount any link between thimersol (or MMR or vaccines) and autism."
This is generally right. The overall scientific evidence has not demonstrated that there is a connection between vaccines (or any component of vaccines) and autism. Yet clearly this has not stopped the debate or convinced most parents of children with autism.
So I keep asking, why not? In part, this hypothesis is kept alive by a variety of people who are effectively using the media to focus on this issue.
But I also think that scientists have not engaged in the pubic debate effectively by providing the evidence for why this in not the case. We keep repeating the conclusions as if when "experts" (at least from the scientific community) speak that is the final word. On the other hand, parents of autistic children, another kind of "expert" continue to voice their views that their personal experience is otherwise. That is, there is a connection between the timing of their children's vaccine and the onset of autistic symptoms.
Scientists must find a way to talk about the lack of convincing evidence for a vaccine to autism link, yet validate parents' experiences that there seems to be a relationship. Tough assignment, but necessary.
Scientists will be much more convincing in the long-run if they acknowledge the importance of generating various hypotheses (like vaccines as a cause) and the careful exploration of these hypotheses and the often mixed evidence that emerges.
Saturday, May 17, 2008
Blogs and Science-- The Autism-Vaccine Debate
The debate over the link between vaccines and autism is a good example of how science is getting handled in the Web 2.0/user-generated content world.
In 2007 Jennifer Singh and her colleagues reported the results of their study examining the disconnect between the media/public discussion of the link between vaccines and autism and the scientific discussion. The major finding was that the public/media discussion was more focused on the link between vaccines and autism than the scientific community. In short, most of the scientific work was looking at other causes of autism outside of the vaccines.
The authors come to the following conclusion:
My results indicate that no scientists were among the 14 blog posts I sampled. Although 57% of the blog posts mention scientific findings, these findings tend to be very selective and focus on relatively few studies overall. Two of the blog posts (see Texas two Step, Science Based Medicine) have very thorough and thoughtful analyses of the scientific findings and the scientific weaknesses of some of the more popular reports that tend to favor the link between vaccines or environmental causes and autism.
Although my efforts are much more limited, they illustrate that the issue identified by Singh persists and may be even more prevalent today especially since the advent of Web 2.0 technologies in which many more people can voice their views beyond traditional media outlets.
Singh and her colleagues discuss how the discussion of science in the media shapes the public's perception of scientific findings and policy decisions. They suggest that scientists need to be more involved in presenting science in the media. Based on my limited analysis of blog posts it continues to appear that scientists are not very active in the use of Web 2.0 technologies to present scientific information.
In 2007 Jennifer Singh and her colleagues reported the results of their study examining the disconnect between the media/public discussion of the link between vaccines and autism and the scientific discussion. The major finding was that the public/media discussion was more focused on the link between vaccines and autism than the scientific community. In short, most of the scientific work was looking at other causes of autism outside of the vaccines.
The authors come to the following conclusion:
"The take-home message from these analyses is that despite a relatively long and intricate history of autism, millions of dollars of funding and thousands of papers in the peer-reviewed literature to explore causes, symptoms and possibilities for intervention, the selective reporting of the press was in sharp contrast to the focus of research and funding. Perhaps, as Nelkin suggests: 'In an age where communication among scientists is specialized and obscure, simplification is an essential if not a controversial part of making science palatable to the public.' In the case of autism, the press provided information to the public that was straightforward to understand and to which the public could then respond actively or, indeed, reactively."Today I followed up this research is a very crude analysis of the blogosphere regarding the "autism-vaccine" link. Using Google Search of blogs, I identified all the blogs that include both the words "autism" and "vaccine" during the two-week period (May 3-16, 2008). I identified 105 blog posts (mean = 7.5 per day). I randomly sampled 15% of the posts and coded them for whether or not they mentioned scientific research or not and whether or not the author was a scientist.
My results indicate that no scientists were among the 14 blog posts I sampled. Although 57% of the blog posts mention scientific findings, these findings tend to be very selective and focus on relatively few studies overall. Two of the blog posts (see Texas two Step, Science Based Medicine) have very thorough and thoughtful analyses of the scientific findings and the scientific weaknesses of some of the more popular reports that tend to favor the link between vaccines or environmental causes and autism.
Although my efforts are much more limited, they illustrate that the issue identified by Singh persists and may be even more prevalent today especially since the advent of Web 2.0 technologies in which many more people can voice their views beyond traditional media outlets.
Singh and her colleagues discuss how the discussion of science in the media shapes the public's perception of scientific findings and policy decisions. They suggest that scientists need to be more involved in presenting science in the media. Based on my limited analysis of blog posts it continues to appear that scientists are not very active in the use of Web 2.0 technologies to present scientific information.
Saturday, April 19, 2008
Research Blog on Autism
The Autism Research Blog is a Web 2.o solution to translating scientific findings for the general public. The author describes himself as: "a clinical child psychologist and neuroscience researcher working at a large Midwest university-based child psychiatric institute" and gives the following purpose of the blog:
As a scientist I find this a good summary and a thoughtful presentation of the evidence. But what does the public think in general? Is this convincing to parents? Is this a good way to present science?
Translating Autism is an autism research blog intended to rapidly disseminate the latest scientific findings related to the nature, causes, & treatments of autism spectrum disorders. Only a minuscule portion of the autism research ever reach parents, educators and consumers, and this blog was created to help close that gap. In this blog I present scientific findings with some, but minimal, editorial content.This recent post on the history of the controversy on the relationship between vaccines and autism.
As a scientist I find this a good summary and a thoughtful presentation of the evidence. But what does the public think in general? Is this convincing to parents? Is this a good way to present science?
Friday, April 18, 2008
Lessons for Educating Parents from the Autism-Vaccine Debate
I have been following the debate about whether or not vaccines cause autism in the blogs and in the media. You can find current links to these topics in my list on the right hand side of the page.
My main interest is how this debate is unfolding in the discussions among the various interests in this debate. There are lessons here about how issues like this are played out in this new media environment and those who are interested in educating parents and providing scientific information on policy and practice issues may be able to learn how to effectively communicate in a Web 2.0 media world.
In this post I look at how various organizations and individuals are contributing to this discussion.
I began to get an idea about what people are doing by searching Google with the phrase "early warning signs of autism," a topic that I think would be of interest to parents who are concerned about the development of their children. I followed the first five links on the page and search the websites for "autism-vaccine" to see what they said, if anything, about this topic. Here is what I found:
Some Examples of Websites on Vaccines and Autism
Site # 1: Bridges4kids is an independent website that identifies professional educators as the sources of the material. They write, "Bridges4Kids was founded in 2002 by Deborah K. Canja and Jackie D. Igafo-Te'o after realizing the need for a comprehensive system of support on the web for ALL children."
This site had 67 links to articles on "autism-vaccines." In general this site does not seem to produce its own content, but provides links to news articles and other material about topics of interest to parents. The editors of the website provide no information about how they select information to include on the website. Here are some examples: The first article is a link to an organization that is organized to publicize the dangers of mercury used in vaccines. (This is one the suspected links to autism.)
The second link is to a news article from the Baltimore Sun in 2003 that summarizes a Danish study that provides evidence that vaccines (and mercury) are not linked to autism.
The 3rd link is to a news article from the Post-Dispatch in 2004 that reports on research from a non-university group that finds that there is a link between vaccines and autism.
The next link is the ABC News which I skipped and then the next link is Science Daily which is descibed by the editors as "one of the Internet's leading online magazines and Web portals devoted to science, technology, and medicine. The free, advertising-supported service brings you breaking news about the latest discoveries and hottest research projects in everything from astrophysics to zoology."
As you might guess this website returns many stories on the topic-- in fact 362 stories. A reminder about the media coverage this topic is receiving in the media.
The next link is to a YouTube video with the title of Early Sign of Autism-- Stacking Blocks.
There are over 200 comments mostly from parents and siblings of children of autism that note the similarities between the child on the video and their own experiences. The video is authored by aware4autism who describes herself as a parent who is committed to helping people understand autistic children.
The link on Google is Helpguide.org which "was created in 1999 by the Rotary Club of Santa Monica with active participation by Rotarians Robert and Jeanne Segal following the tragic suicide of their daughter Morgan." The site covers many family and child related topics.
There is one link with the terms "autism vaccines. The article covers a variety of issues of concern to parents about autism including early warning signs, possible causes of autism and more. There is a section on the vaccine issue. Here is the first paragraph:
"When it comes to autism, no topic is more controversial than childhood vaccinations. At the center of this controversy is thimerosal, a mercury-containing preservative once commonly used in vaccines to prevent bacterial and fungal contamination. The concern is that exposure to thimerosal may lead to mercury poisoning and autism. Scientific research, however, does not support the theory that childhood vaccinations cause autism."
The article goes on to note all the major government and scientific societies that have concluded that there is no link between vaccines and autism.
Conclusion
At least these first five websites generally do not report some of the more extreme views about vaccines causing autism. The Bridges4kids and Science Daily site just make links to many news articles and other information without any filtering or guidance. The reader must make his or her own judgments about the validity of the information.
The HelpGuide provides a thoughtful summary of the views of most scientists on the topic. It is written in a very readable form and has a feel of "professionalism."
The YouTube video is an interesting link for parents. Here is a chance to see several videos. This could be an interesting way to illustrate some of the characteristics of children with autism, but there is little to guide the viewer to see the specific characteristics.
My main interest is how this debate is unfolding in the discussions among the various interests in this debate. There are lessons here about how issues like this are played out in this new media environment and those who are interested in educating parents and providing scientific information on policy and practice issues may be able to learn how to effectively communicate in a Web 2.0 media world.
In this post I look at how various organizations and individuals are contributing to this discussion.
I began to get an idea about what people are doing by searching Google with the phrase "early warning signs of autism," a topic that I think would be of interest to parents who are concerned about the development of their children. I followed the first five links on the page and search the websites for "autism-vaccine" to see what they said, if anything, about this topic. Here is what I found:
Some Examples of Websites on Vaccines and Autism
Site # 1: Bridges4kids is an independent website that identifies professional educators as the sources of the material. They write, "Bridges4Kids was founded in 2002 by Deborah K. Canja and Jackie D. Igafo-Te'o after realizing the need for a comprehensive system of support on the web for ALL children."
This site had 67 links to articles on "autism-vaccines." In general this site does not seem to produce its own content, but provides links to news articles and other material about topics of interest to parents. The editors of the website provide no information about how they select information to include on the website. Here are some examples: The first article is a link to an organization that is organized to publicize the dangers of mercury used in vaccines. (This is one the suspected links to autism.)
The second link is to a news article from the Baltimore Sun in 2003 that summarizes a Danish study that provides evidence that vaccines (and mercury) are not linked to autism.
The 3rd link is to a news article from the Post-Dispatch in 2004 that reports on research from a non-university group that finds that there is a link between vaccines and autism.
The next link is the ABC News which I skipped and then the next link is Science Daily which is descibed by the editors as "one of the Internet's leading online magazines and Web portals devoted to science, technology, and medicine. The free, advertising-supported service brings you breaking news about the latest discoveries and hottest research projects in everything from astrophysics to zoology."
As you might guess this website returns many stories on the topic-- in fact 362 stories. A reminder about the media coverage this topic is receiving in the media.
The next link is to a YouTube video with the title of Early Sign of Autism-- Stacking Blocks.
There are over 200 comments mostly from parents and siblings of children of autism that note the similarities between the child on the video and their own experiences. The video is authored by aware4autism who describes herself as a parent who is committed to helping people understand autistic children.
The link on Google is Helpguide.org which "was created in 1999 by the Rotary Club of Santa Monica with active participation by Rotarians Robert and Jeanne Segal following the tragic suicide of their daughter Morgan." The site covers many family and child related topics.
There is one link with the terms "autism vaccines. The article covers a variety of issues of concern to parents about autism including early warning signs, possible causes of autism and more. There is a section on the vaccine issue. Here is the first paragraph:
"When it comes to autism, no topic is more controversial than childhood vaccinations. At the center of this controversy is thimerosal, a mercury-containing preservative once commonly used in vaccines to prevent bacterial and fungal contamination. The concern is that exposure to thimerosal may lead to mercury poisoning and autism. Scientific research, however, does not support the theory that childhood vaccinations cause autism."
The article goes on to note all the major government and scientific societies that have concluded that there is no link between vaccines and autism.
Conclusion
At least these first five websites generally do not report some of the more extreme views about vaccines causing autism. The Bridges4kids and Science Daily site just make links to many news articles and other information without any filtering or guidance. The reader must make his or her own judgments about the validity of the information.
The HelpGuide provides a thoughtful summary of the views of most scientists on the topic. It is written in a very readable form and has a feel of "professionalism."
The YouTube video is an interesting link for parents. Here is a chance to see several videos. This could be an interesting way to illustrate some of the characteristics of children with autism, but there is little to guide the viewer to see the specific characteristics.
Wednesday, April 16, 2008
National Institute of Health-- Public Access to Research
The public will have a new way of reading scientific information due to a new policy at the National Institutes of Health will now requires that all research funded by the agency must be made available to the public through PubMed Central.
For example, here the public can search for the latest research on the relationship between vaccines and autism.
This allows people to read more deeply about these issues and not rely on bloggers and celebrities to report on the research. This open access to research is an important step in gaining a deeper understanding of science.
For example, here the public can search for the latest research on the relationship between vaccines and autism.
This allows people to read more deeply about these issues and not rely on bloggers and celebrities to report on the research. This open access to research is an important step in gaining a deeper understanding of science.
Tuesday, April 08, 2008
Opening science to the Media in a Web 2.0 world
How do we manage science in an age of information overload? How can the voices of scientists be heard when there are so many other voices? My first thought was that we need our own celebrity spokesperson who can do interviews and talk shows and communicate the message for scientists, but that does not seem like the right solution.
In order for science to compete in today's media rich environment I think we have to open up our scientific laboratories and scientific debates as we have never done before. I think we have to show the process of scientific thinking, experimentation, theory-building, and so forth in order to teach people how to think about ideas from a scientific perspective.
Too often scientific information is presented as facts or knowledge as if there were no debates, no mistakes, and no wrong assumptions. This gives the impression that science has settled the questions and that there is nothing left to learn or that this is the final statement of fact. Yet all scientists know that there are many questions and there is always new evidence or new perspectives that change our views on matters. When there is new information or there are changes in our understanding, this often gets communicated in the popular press as a demonstration that scientists don't really understand much about this at all. This is not usually the case.
Rather than try to compete in the war of words, scientists should change the conversation so that people become engaged in scientific thinking. This means returning to the basics of learning to state testable propositions and inviting people to think through rationales for various processes and activities, then accumulating and evaluating evidence in order to support or refute hypotheses. Rather than be sages or experts scientists need to be teachers and collaborative guides through the analysis. It may be more important to invite people to think more carefully about an issue or topic than to provide your own conclusions.
Let's take an example of what I have in mind. There is a current debate about the role of MMR (mumps, measles & rubella) vaccinations in causing autism. The National Institutes of Health has released a well-written document that provides a summary of the best scientific analysis of this issue. It presents summaries of some of the major studies on the topic, it notes the scientific panels that have looked at this issue. Additionally, the article reminds the reader that there are many types of risks besides the risk of autism and concludes with advice to parents and a list of the scientific studies. This is a good example of what we usually provide to the public regarding many scientific questions and it is good, but this summary does not give the public any idea about the scientific analysis that led to these conclusions and recommendations. We know that the evidence is never perfectly clear, there are always disputes about what weight to give various studies and various types of outcomes. It is rare for all scientists to completely agree on every conclusion and every recommendation. It is this process of sifting through the evidence and moving toward conclusions that needs to be more apparent. This is the scientific box that we need to open up.
At this point I am sure that the scientists reading this are going to object and remind us that it takes a lot of training to learn how to work through scientific research. This is not something that everyone can do or is done easily. This is true, but I am suggesting that scientific thinking can be more transparent in the way that it is presented. It can include statements about the limits of our knowledge, the questions that remain and the points of dispute between various scientists.
Now someone will probably say that this will be even more confusing to the public because it will make it appear as if scientists really don't know everything about everything.... which is of course true and has always been true. I think that by displaying scientific thinking we invite the public to examine their own assumptions and evidence in new ways and hopefully, it encourages them to think more critically about other's statements and judgments. More critical and scientific thinking about issues and more careful reading of reports seems like a positive outcome.
In order for science to compete in today's media rich environment I think we have to open up our scientific laboratories and scientific debates as we have never done before. I think we have to show the process of scientific thinking, experimentation, theory-building, and so forth in order to teach people how to think about ideas from a scientific perspective.
Too often scientific information is presented as facts or knowledge as if there were no debates, no mistakes, and no wrong assumptions. This gives the impression that science has settled the questions and that there is nothing left to learn or that this is the final statement of fact. Yet all scientists know that there are many questions and there is always new evidence or new perspectives that change our views on matters. When there is new information or there are changes in our understanding, this often gets communicated in the popular press as a demonstration that scientists don't really understand much about this at all. This is not usually the case.
Rather than try to compete in the war of words, scientists should change the conversation so that people become engaged in scientific thinking. This means returning to the basics of learning to state testable propositions and inviting people to think through rationales for various processes and activities, then accumulating and evaluating evidence in order to support or refute hypotheses. Rather than be sages or experts scientists need to be teachers and collaborative guides through the analysis. It may be more important to invite people to think more carefully about an issue or topic than to provide your own conclusions.
Let's take an example of what I have in mind. There is a current debate about the role of MMR (mumps, measles & rubella) vaccinations in causing autism. The National Institutes of Health has released a well-written document that provides a summary of the best scientific analysis of this issue. It presents summaries of some of the major studies on the topic, it notes the scientific panels that have looked at this issue. Additionally, the article reminds the reader that there are many types of risks besides the risk of autism and concludes with advice to parents and a list of the scientific studies. This is a good example of what we usually provide to the public regarding many scientific questions and it is good, but this summary does not give the public any idea about the scientific analysis that led to these conclusions and recommendations. We know that the evidence is never perfectly clear, there are always disputes about what weight to give various studies and various types of outcomes. It is rare for all scientists to completely agree on every conclusion and every recommendation. It is this process of sifting through the evidence and moving toward conclusions that needs to be more apparent. This is the scientific box that we need to open up.
At this point I am sure that the scientists reading this are going to object and remind us that it takes a lot of training to learn how to work through scientific research. This is not something that everyone can do or is done easily. This is true, but I am suggesting that scientific thinking can be more transparent in the way that it is presented. It can include statements about the limits of our knowledge, the questions that remain and the points of dispute between various scientists.
Now someone will probably say that this will be even more confusing to the public because it will make it appear as if scientists really don't know everything about everything.... which is of course true and has always been true. I think that by displaying scientific thinking we invite the public to examine their own assumptions and evidence in new ways and hopefully, it encourages them to think more critically about other's statements and judgments. More critical and scientific thinking about issues and more careful reading of reports seems like a positive outcome.
Monday, April 07, 2008
Autism and Vaccines--Science vs. Celebrity
In a previous post I talked about some of the potential dangers of managing information in a Web 2.0 world. A colleague suggested the controversy over whether childhood vaccinations cause autism as an example of how challenging it is to talk about these issues in a Web2.0 world.
In general the medical and scientific community maintains that there is no definite evidence that there is no connection between vaccinations and autism.
However, there are numerous websites and celebrities who have taken up this cause and continue to assert that the scientists and doctor's are wrong. Here is a sampling of the some recent news, blogs, etc:
Jenny McCarthy's view that diet helped her son recover from autism.
Alison Rose Levy in the autism dilemma writes,
In the same article he also comments on his reaction to physicians and other scientists who have challenged some of his assertions in previous articles noting:
The CDC has also continued to try and get the message out about advice to parents regarding vaccines and its efforts to continue to study the issue.
One of the most complicated parts of this discussion is that the research in this area is not definitive and there are new questions. Terry Mauro comments on this issue in her review of the debate stating:
At least part of what we need to have is some new ways of deriving clarity from these discussions. Are these new "filtering" tools. Are they some types of integrative processes? This type of process is not going away. What we need are some better ways to manage it.
In general the medical and scientific community maintains that there is no definite evidence that there is no connection between vaccinations and autism.
However, there are numerous websites and celebrities who have taken up this cause and continue to assert that the scientists and doctor's are wrong. Here is a sampling of the some recent news, blogs, etc:
Jenny McCarthy's view that diet helped her son recover from autism.
Alison Rose Levy in the autism dilemma writes,
David Kirby critiques the Center for Disease Control's studies regarding the safety of vaccines.The underlying fear and anger towards these parents suggests that it's somehow heretical to question any proffering of scientific "proof" even when it squares off with experience--in this case, parents' tragic and oft repeated experience of watching hundreds of thousands of children immediately deteriorate upon vaccination.
As these two different and valid kinds of evidence collide, the collision should awaken the spirit of scientific inquiry. Instead it's viewed as a threat.
In the same article he also comments on his reaction to physicians and other scientists who have challenged some of his assertions in previous articles noting:
I get nasty emails from some pediatricians, and the number-one complaint I get from them is that, because of people like me, they must now "waste" (their word, not mine) precious billing hours talking to layperson parents about vaccine science.This is a reminder that even when you join in the discussion you are going to get reactions from those whose views you may disagree with. The Web 2.0 is a two-way street and there will be give and take on both sides.
The CDC has also continued to try and get the message out about advice to parents regarding vaccines and its efforts to continue to study the issue.
One of the most complicated parts of this discussion is that the research in this area is not definitive and there are new questions. Terry Mauro comments on this issue in her review of the debate stating:
The research done thus far mostly indicates that more research needs to be done -- into the causes of autism, and into the possibilities of vaccine injury. As that research continues, so do the firefights between those who believe fervently that vaccinations damaged their children, and those who believe fervently that vaccinations are an important tool for public health that we dare not challenge. The result is a Holy War that is played out daily in medical circles and the media and the Internet and support groups and message boards and anywhere people with strong opinions gather to yell at each other. The stakes couldn't be higher, on either side -- which is what makes uncertainty so unbearable.Most researchers and professionals are likely to look at this debate and come to the conclusion that they wouldn't want to be involved in this wide open discussion with no rules that is the hallmark of the Web2.0. It is unclear, if after all the words, that this discussion is moving towards useful outcomes for either parents who want this information and scientists and policy makers who want to inform the public and protect the public.
At least part of what we need to have is some new ways of deriving clarity from these discussions. Are these new "filtering" tools. Are they some types of integrative processes? This type of process is not going away. What we need are some better ways to manage it.
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