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Advocacy’s Power and the Disease Olympics

One day in 2007 Ambassador Richard Sklar, who had pancreatic cancer, and Julie Fleshman, head of the nonprofit Pancreatic Cancer Action Network (PCAN), visited the D.C. office of House Representative Anna Eshoo to see if she might consider sponsoring legislation for more pancreatic cancer research. Sklar and Eshoo were friends.

“I asked him, Dick, why haven’t I heard from anyone on this?” Eshoo recalls. “And in a rapid-fire answer he said, because they’re dead.”

Eshoo learned that only 6 percent of people diagnosed with pancreatic cancer live longer than five years, and 74 percent die within a year. “The needle, so to speak, had not moved in half a century,” Eshoo says. “That, in and of itself, was an indication that whatever we were doing was clearly not enough.”

Over the next couple of years, PCAN’s advocacy efforts grew more visible because of emotional Congressional testimony by Carnegie Mellon professor Randy Pausch, who was dying of pancreatic cancer, and the news that actor Patrick Swayze was diagnosed. Eshoo introduced a bill, called The Pancreatic Cancer Research and Education Act, in September of 2008, then re-introduced it in January of 2009 and again in February 2011. As originally written, the bill would have directed the federal government to spend $888 million over five years on research and awareness campaigns focused solely on pancreatic cancer.

By August of last year, the bill was close to passing — until a bunch of scientists got wind of it and started raising hell. Their primary argument was that the bill undermined the scientific authority of the National Institutes of Health, which funds the vast majority of federal cancer research. In response to the criticism, the bill’s sponsors quickly scrapped its earmarks and even changed the name, to the Recalcitrant Cancer Research Act, to include other hard-to-treat cancers. “There were lots of behind the scenes meetings with leadership to figure out how it was going to move forward,” Fleshman says. “There were definitely many different times when we had to re-group and say, ‘OK, are we ok with this?’”

The revised bill passed the House unanimously on September 19. A week later, Harold Varmus, director of the National Cancer Institute, talked about the original bill at the National Press Club. “This is a slippery slope, and it’s a dangerous one,” Varmus said. If the bill’s original language had passed, it would have led to a disease-based competition, he added. “Very quickly, every other advocacy group would say, I want that, too. And then we have chaos.”

by Sydney Smith

In a story out yesterday in Nature Medicine, I tried to dig into this tricky issue, sometimes called the “disease olympics.” In the past couple of years, a slew of studies — conducted by economists, sociologists and political scientists — have come out showing that, over the past two decades, there’s been a dramatic rise in nonprofit disease groups and the money they spend on lobbying. Over the same period, the number of disease-specific bills shot up and NIH began classifying its grants according to disease.

Advocates say this isn’t a problem: The NIH is a publicly funded organization, after all, and should be responsive to the wishes of the public. The voices of advocates are important because they often point to clinical concerns that basic scientists don’t think about.

But basic scientists worry that advocates don’t think enough about scientific opportunity. The reason the NIH hasn’t spent more money on pancreatic cancer, for example, is because it’s inherently more difficult to study than, say, breast cancer or prostate cancer. Pancreatic cancer doesn’t give rise to noticeable symptoms until very late in the disease, so there are no screening tests that would allow researchers to track the course of those who have it. Besides, scientists say, scientific insights learned from one cancer might very well apply to another type.

In the end, I think the current system tends to create checks and balances that work pretty well. The Recalcitrant Cancer bill, for example, was eventually signed into law, and all parties involved say they’re fairly happy with it.

One thing I’m still curious about, though, is the effect of the sequester: With NIH dealing with significant budget cuts, will advocacy become more powerful, or less?

My sources had very different responses to this question. One possibility is that budget cuts won’t have much of an influence on the disease olympics. “It might be more or less across-the-board cuts, and so that it might not really effect the composition of the research that much,” says Frank Lichtenberg, a professor at Columbia Business School.

On the other hand, it’s interesting that the rise of disease-specific organizations came at the same time that the NIH budget was growing rapidly. During that period, advocacy wasn’t a zero-sum game: the government could put more money into one disease without taking from another. With the budget cuts, though, advocates could get much more competitive. “It would be a shame if that meant that diseases that had stronger advocacy would be preserved at the expense of diseases without advocates,” says Clay Johnston, director of UCSF’s Clinical and Translational Science Institute. “We would all suffer from that.”


Illustrations by Sydney Smith

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A 61-million-person experiment on Facebook shows how ads and friends affect our voting behaviour

On November 2nd, 2010, more than 61 million adults visited Facebook’s website, and every single one of them unwittingly took part in a massive experiment. It was a randomised controlled trial, of the sort used to conclusively test the worth of new medicines. But rather than drugs or vaccines, this trial looked at the effectiveness of political messages, and the influence of our friends, in swaying our actions. And unlike most medical trials, this one had a sample size in the millions.

It was the day of the US congressional elections. The vast majority of the users aged 18 and over (98 percent of them) saw a “social message” at the top of their News Feed, encouraging them to vote. It gave them a link to local polling places, and clickable button that said “I voted”. They could see how many people had clicked the button on a counter, and which of their friends had done so through a set of randomly selected profile pictures.

But the remaining 2 percent saw something different, thanks to a team of scientists, led by James Fowler from the University of California, San Diego. Half of them saw the same box, wording, button and counter, but without the pictures of their friends—this was the “informational message” group. The other half saw nothing—they were the “no message” group.

By comparing the three groups, Fowler’s team showed that the messages mobilised people to express their desire to vote by clicking the button, and the social ones even spurred some to vote. These effects rippled through the network, affecting not just friends, but friends of friends. By linking the accounts to actual voting records, Fowler estimated that tens of thousands of votes eventually cast during the election were generated by this single Facebook message.


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The power of nouns – tiny word change increases voter turnout

Countries around the world have tried many tactics to encourage people to vote, from easier access to polling stations to mandatory registration. But Christopher Bryan from Stanford University has found a startlingly simple weapon for increasing voter turnout – the noun. Through a simple linguistic tweak, he managed to increase the proportion of voters in two groups of Americans by at least 10 percentage points.

During the 2008 presidential election, Bryan recruited 34 Californians who were eligible to vote but hadn’t registered yet. They all completed a survey which, among other questions, asked them either “How important is it to you to be a voter in the upcoming election?” or “How important is it to you to vote in the upcoming election?”

It was the tiniest of tweaks – the noun-focused “voter” versus the verb-focused “vote” – but it was a significant one. Around 88% of the noun group said they were very or extremely interested in registering to vote, compared to just 56% of the verb group.


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Seeing an American flag can shift voters towards Republicanism


As a visitor to the USA, one sometimes gets the feeling that it’s hard to move or look around without seeing a flag. They are seemingly everywhere, an omnipresent reminder of national identity. But the star-spangled banner is more than a symbol; it can also influence minds in unexpected ways. Travis Carter from the University of Chicago has found that when people think about voting decisions, the mere sight of the American flag can subtly shift their political views… towards Republicanism.  It’s an effect that holds in both Democrats and Republicans, it affects actual votes, and it lasts for at least 8 months.

In the run-up to the 2008 US presidential election, Carter recruited a group of around 200 volunteers and asked them about their political views. A month or so later, he split them into two groups that were comparable in terms of their political beliefs, voting intentions and other variables. Both groups rated how likely they were to vote for either the Democrat Barack Obama or the Republican John McCain on an online questionnaire. The questionnaires were identical except for one small detail – in the top left corner of the screen, one group saw a small American flag and the other saw nothing.

That tiny difference was enough to swing their voting preferences. Carter found that the volunteers who saw the tiny flag became more likely to vote for McCain than Obama (relative to their answers at the start of the experiment). They claimed to feel more positive towards the Republicans and even when Carter tested their unconscious atittudes, a small Republican bias still came through.


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Sports results can affect election results


Anyone currently following the World Cup, Wimbledon, or any of the many sporting events around the world will know the emotional highs and lows that they can produce. But these events wield even more power than we think. According to Andrew Healy­ from Loyola Marymount University, sports results can even swing the outcome of an election.

In the US, if a local college football team wins a match in the ten days before a Senate, gubernatiorial or even presidential election, the incumbent candidate tends to get a slightly higher proportion of the vote. This advantage is particularly potent if the team has a strong fan-base and if they were the underdogs. Healy’s study provides yet more evidence that voting decisions aren’t just based on objective and well-reasoned analysis, despite their importance in democratic societies. They can be influenced by completely irrelevant events, putting the fate of politicians into the hands (or feet) of sportsmen.

Healy says that a victory by a local team puts sports fans in a generally positive frame of mind. If they approach the ballot box in this way, they’re more likely to think well of the incumbent party, to interpret their past record more positively, and to be more content with the status quo. The same effect, where emotions cross the boundaries between different judgments, has been seen countless times before in laboratory studies.


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Subliminal flag shifts political views and voting choices

This article is reposted from the old WordPress incarnation of Not Exactly Rocket Science.

For all the millions that are poured into electoral campaigns, a voter’s choice can be influenced by the subtlest of signals. Israeli scientists have found that even subliminal exposure to national flags can shift a person’s political views and even who they vote for. They managed to affect the attitudes of volunteers to the Israeli-Palestine conflict by showing them the Israeli flag for just 16 thousandths of a second, barely long enough for the image to consciously register.

These results are stunning – even for people right in the middle of the one of the modern age’s most deep-rooted conflicts, the subconscious sight of a flag drew their sympathies towards the political centre.

In some ways, it’s not surprising. The last decades of experimental psychology have shown us that the our conscious view of the world is a construct created by our brain. We simply cannot consciously process the barrage of information constantly arriving through our senses and to save us from a mental breakdown, our brain does a lot of subconscious computing. The upshot of this is that our decisions can be strongly influenced by sights, sounds and other stimuli that we’re completely unaware of. Have a look at this video of mind-manipulator Derren Brown for a classic example of this.

Our political views are no different. In an ideal world, we would base them on a rational consideration of the relevant facts and our own beliefs, but in the real one, subliminal symbols pull on the puppet-strings too. National flags should be capable of this; to many people, they carry a weighty importance out of all proportion to their nature as rectangular sheets of cloth


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How light or dark is Barack Obama’s skin? Depends on your political stance…

In the early days of the last US elections, Hillary Clinton’s campaign was accused of deliberately darkening Barack Obama’s skin in a TV ad. The implication was that by highlighting Obama’s “blackness”, Clinton’s camp was trying to exploit negative associations that voters might have with darker skin. But you don’t need editing software to do that – a fascinating new study suggest that people literally change the way they see a mixed-race politician, depending on whether the candidate represents their own political views.

Liberal American students tend to think that lighter photos of Barack Obama are more typical of him, while conservatives think he’s best represented by darker photos. You can see this effect even after adjusting for any racial prejudices, be they hidden or overt, and even with a person less famous than Obama. And regardless of political views, people who associated Obama with lightened photos were most likely to vote for him.

Eugene Caruso from the University of Chicago, who led the study, thinks that this effect is the result of two biases: the positive associations of white and lightness among some Western cultures; and the tendency to view people of the same group (political or otherwise) more favourably than those of another group. He says, “Group membership provides a lens through which people generate representations of reality.”

Caruso asked 221 students about their political ideologies and then showed them three photos of Obama and three of John McCain. On the grounds that some photos can capture the “true essence” of a politician better than others, the students were asked to rate how well each photo represented each man. But unbeknownst to them, two of each set of pictures had been altered with Photoshop, so that the subject’s skin tone was either lighter or darker.

When it came to McCain, the students’ political leanings had no bearing on their choice of photos. For Obama, it was a different matter – liberal students were more likely to pick the lightened photo as the one that represented him best. Conservative students were more than twice as likely to associate him with the darkened photo. These biases were reflected in the students’ votes. Whether liberal or conservative, the more people associated Obama with the lightened photo, the more they were likely to vote for him.

Of course, this effect could simply be down to racism – people who harbour prejudices against Blacks would be more likely to associate Obama with a darker photo and less likely to vote for him. But Caruso accounted for that – he repeated the experiment with 49 people a week before the last election and specifically evaluated the recruits’ attitudes on race.

Each of them filled in a questionnaire called the Attitudes Toward Blacks scale, which asked them whether they agreed with statements such as “Generally, Blacks are not as smart as Whites.” Obviously, people can lie on these questionnaires, so each volunteer also did an “implicit association test” (IAT), designed to reveal any hidden prejudices (try one here).

The same patterns emerged as before and this time, Caruso found that they remained even after adjusting for racial attitudes, both hidden and explicit. A week after the election, Caruso caught up with his recruits and confirmed that those who thought the lightened photos represented Obama were actually more likely to have voted for him. Those who linked him to the darkened photo were more likely to have voted for McCain. Amazingly, the photo effect turned out to be a better indicator of voting choice than the scores on either of the two prejudice tests.

Barack Obama’s fame is perhaps a bit of a distractor since people can judge him on his policies, personality and more than just his skin colour. But Caruso found the same effect using a non-celebrity.  He asked 102 students about their views on important educational issues and then showed them three photos of a man allegedly running for a position in the US Department of Education. He told them that the mystery politician either agreed or disagreed with most of their stances.

But Caruso kept two important things from the recruits. First, the ‘politician’ was actually Jarome Iginla, a mixed-race ice hockey player whose father was a Black Nigerian and whose mother was a White American. None of the students twigged to this. Secondly, as before, some of the photos had been doctored so that Iginla’s skin tone was either lighter or darker.

The same trend emerged. Caruso found that students who were told that the politician supported their views were more than twice as likely to pick the lightened photo as the most representative one. Those who thought that Iginla disagreed with them were more likely to associate him with the darkened photo.  And across the board, people who picked the lightened photo were most likely to vote for him. 

Across all three experiments, the way that American students literally see a mixed-race politician depends on whether they agree with his views. If they felt aligned with a candidate, they tended to mentally lighten his skin, and Caruso suggests that this might reflect subconscious associations of white with good, and black with bad. Sadly, the study provides no information about the ethnicity of the students involved – it would be very interesting to see if the same bias in perception applies to viewers who are themselves Black.

Reference: PNAS  doi:10.1073/pnas.0905362106

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Predicting ethnic violence – why good neighbours need good fences

This article is reposted from the old WordPress incarnation of Not Exactly Rocket Science.

Everybody, apparently, needs good neighbours, but in many parts of the world, your neighbours can be your worst enemy. In the past century, more than 100 million people have lost their lives to violent conflicts. Most of these were fought between groups of people living physically side by side, but separated by culture or ethnicity.

Good fences make good neighboursNow, May Lim and colleagues from the New England Complex Systems Institute have developed a mathematical model that can predict where such conflicts by looking at how different groups are spread out in a given area.

According to their research, violence is most likely to erupt in areas with poorly-defined boundaries between large and culturally different groups. Their model predicted areas of ethnic violence in both India and Yugoslavia with uncanny accuracy, and Lim hopes that it will help policymakers to look at the problem of violent conflicts with a scientific eye.

Many studies on the triggers of violence have focused on familiar issues such as historical grudges, competition over resources or religious differences. But Lim approached the problem from a new and different angle.

She tested the idea that the issues that different cultural and ethnic groups fight over are secondary to the way those groups are spread out geographically. In her vision, violence is most likely to erupt when the boundaries between these groups is poorly defined. These hazy boundaries create local hotspots of tension, which can be easily pushed into violent conflict because of other social and economic factors.


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Voters use child-like judgments when judging political candidates

Blogging on Peer-Reviewed ResearchDuring elections, what affects our decision to vote for one politician over another? We’d like to think that it’s an objective assessment of many different factors including their various policies, their values, their record and so on. But in reality, voters are just not that rational.

In the past, studies have shown that people can predict which of two politicians will win an election with reasonable accuracy based on a second-long looks at their faces. With a fleeting glance and little purposeful consideration, people make strong judgments about a candidate’s competence, that can sway their final choices. And they do this in a remarkably child-like way.

John Antonakis and Olaf Dalgas from the University of Lausanne found that when judging the faces of potential leaders, the decision-making technique of adults is no more sophisticated than that used by children.


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Political attitudes linked to startle reflexes

Blogging on Peer-Reviewed ResearchWhen we’re suddenly confronted with a shocking image, our skin becomes moist and we blink strongly. These actions are automatic and unintentional; they happen without conscious thought. So it may come as a surprise that they can also predict some of our most seemingly considered beliefs – our political attitudes.

oxley1LR.jpgAccording to a new American study, the stronger these responses, the more likely people are to support the Iraq War, Biblical truth, the Patriot Act and greater defence budgets. Conversely, people who show weaker “startle reflexes” are more likely to support foreign aid, immigration, gay marriage and abortion rights. 

Douglas Oxley from the University of Nebraska-Lincoln led the study and he suggests that the factor that unites these attitudes is an interest in protecting one’s social structure from threats. These “threats” can come both from abroad or from within; they can be physical dangers like hostile foreign powers, or threats to the status quo, such as policies that violate longstanding traditions.


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Undecided voters aren’t really undecided – the hidden side of decision-making

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Elections are weighing heavily on our minds. In three short months, America will see the race between Barack Obama and John McCain come to a head, while we in Britain will probably have a general election within the next few years. Some people, of course, will vote based on long-held loyalties to a specific political party, but many of us are more malleable in our choices. What affects the choices of these undecided voters?

People are given to viewing ourselves as rational beings and as such, we’d like to think that our choices are fuelled by objective and careful deliberation. So we pay attention to media coverage, we read up on policies and we listen to debates and only then, having gathered as much information as we can about the various options, do we make a choice. That’s how it plays out in our heads, but according to a new study, the reality may be quite different.

Silvia Galdi at the University of Padova, Italy, has found evidence that the final verdicts of undecided decision-makers are only weakly related to their conscious preferences and more strongly influenced by unconscious views and biases they aren’t aware of. In many cases, when people claim that they are undecided, they have secretly made up our minds, unbeknownst even to themselves.

For example, a British voter sitting on the fence might unconsciously be inclined to vote for David Cameron because they view Gordon Brown as dour, or oppositely because of a prejudice against the Tory party. Likewise, and more unfortunately, an American voter might side with John McCain because of unconscious racial prejudices against black people.

By their very nature, there unconscious associations aren’t easy to find, but psychologists have a tool for doing so – implicit association tests. Volunteers are shown a series of words or images and must classify them into one of two categories by pressing assigned keys. For example, they might have to distinguish good words (happy, joy) from bad words (anger, hate) and white faces from black faces. At first, the categories are presented separately and then in various combinations. So in one trial, you might be asked to press one key for good words and black faces and the other key for bad words and white faces.

The idea is that people perform the task more quickly and more accurately if the combinations of categories matches their unconscious associations between the two categories. So if people have a hidden prejudice against black people, they would be quicker at trials where black faces and bad words were represented by the same key, than those where black faces were twinned with good words. If you want to see these tests in action, Harvard have a large range online and I’d highly recommend having a go yourself.