Health

SECOND OPINION | 'Phantom' research paper cited at least 400 times by scientists

Also: crowdfunding for stem cell treatments, and why kids don’t notice that nature used to be nicer

crowdfunding keyboard

Crowdfunding campaigns are on the rise for stem cell therapies offered by private clinics in the U.S., a health ethicist says, even though the treatments haven't been proven effective. (ESB Professional/Shutterstock)

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Here's this week's round-up of eclectic and under-the-radar health and medical science news. If you haven't subscribed yet, you can do that by clicking here.

Is it ethical to raise money for an unproven treatment that might even be dangerous?

That's the question some health researchers are asking as they study the proliferation of crowdfunding campaigns for stem cell therapies being offered by private clinics.

When health ethicist Jeremy Snyder took a closer look at online fundraising campaigns over the past two years, he discovered 240 different personal funding appeals aimed at raising thousands of dollars for stem cell therapies.

And he learned that some of the stem cell clinics in the U.S. are encouraging clients to use crowdfunding to pay for the treatments.

"I've been interested in crowdfunding for a while," said Snyder, an associate professor at B.C.'s Simon Fraser University. "It raises big equity concerns."

'It brings out the predatory side of this marketplace ... and there are businesses that have no evidence behind them that are happy to capitalize. - Leigh Turner, bioethicist, University of Minnesota

The campaigns were raising money to cover stem cell therapies for a range of conditions including multiple sclerosis, lung disease, Parkinson's disease and several eye diseases.

So far, no stem cell treatments have been approved to treat any of those conditions. Scientists are still researching the potential of stem cells to regenerate tissue and organs and treat disease.

"The requests are typically in the $10,000-$20,000 range," Snyder said, adding that he found one campaign that was asking for $65,000 and another wanted to raise $300,000.

Added up, the individual campaigns raised a total of $1 million, with about 8,400 people donating money.

With stem cell clinics springing up across Canada, Snyder is now taking a closer look at the Canadian crowdfunding situation.

"These are usually procedures that cost thousands or tens of thousands of dollars." said Leigh Turner, a bioethicist at the University of Minnesota who is also involved in the crowdfunding research.

"To me, it brings out the predatory side of this marketplace that you have people, often with very serious health conditions, who are looking for help of some kind, and there are businesses that have no evidence behind them that are happy to capitalize on that suffering and profit from it."

This week, CBC News reported on the burgeoning stem cell industry in Canada, where private clinics are charging patients thousands of dollars for stem cell injections that have not been approved by Health Canada.

Seeing a 'forest' when there are only a few trees

A father and his child drive down a street in Seattle and see it lined with small trees.

The child turns to the dad and exclaims, "Wow, look at the forest!"

With a look of confusion, the dad replies: "That's not a forest."

That true story is an example of "environmental generational amnesia," according to psychology professor Peter Kahn in a new paper published this week.

"The basic idea is that children are born in an environment that's quite degraded, which they perceive as normal," Kahn, from the University of Washington, told CBC News.

Trees

Children growing up in places where they aren't exposed to nature may view a 'degraded' environment as normal, a new study suggests. (Bildagentur Zoonar GmbH/Shutterstock)

Kahn said rural and urban regions have long had differing perspectives on environmental norms — just ask a person from Vancouver and another from Iqaluit what they consider "too much" snow — but the issues of climate change, overfishing and industrialization mean that environmental generational amnesia is a problem for everyone.

This amnesia doesn't show up until two versions of "normal" collide, as in the above example with the father and the son, where the child grew up in an era of rapid deforestation and urbanization.

Kahn said he also noticed the phenomenon when he spoke with inner-city high school students in Houston about pollution. He said the teenagers understood the basics of the problem, such as its dangers and causes, but did not consider where they lived to be polluted. Even though, according to NASA, Houston shares the title with Los Angeles as the most air-polluted city in the U.S.

"We've normalized a sickness," Kahn said.

'Just because it's normal doesn't mean we're doing well.' - Peter Kahn, psychology professor, University of Washington

"The issue is that people largely don't recognize environmental problems as particularly severe," he added. "Just because it's normal doesn't mean we're doing well."

He said this amnesia — where we forget our previous environmental standards and accept a new, more degraded version — is what can lead to a delayed response to climate change.

Kahn said people often aren't aware of the magnitude of environmental problems until they themselves experience environmental generational amnesia, when it may be too late to enact any meaningful change.

Is there a solution?

While natural history and science education is important, Kahn stresses the need to be out in, and interact with, nature in order to form a better appreciation of our environment — especially at a young age.

Knock on wooden shoes

Bio-archeologists have discovered unusual bone damage in the feet of clog-wearing 19th-century Dutch farmers, highlighting the risks of footwear both past and present.

Farmers wore the heavy clogs because they were warm and kept their feet dry. But they probably didn't know they were damaging their feet.

Two centuries later, a Canadian archeologist helped make that accidental diagnosis in a study recently published in the International Journal of Paleopathology.

Seven years ago, Andrea Waters-Rist co-led a team of archeologists examining about 500 skeletons at a church cemetery in Middenbeemster, a tiny dairy-farming village near Amsterdam.

clogs

A young Dutch mother with her children in their national costume including clogs, circa 1935. Researchers have found bone injuries in skeletons of 19th-century Dutch farmers, which they believe could be due to digging, stomping and kicking with clogs on. (Hulton Archive/Getty Images)

Because the church was expanding the building into the cemetery grounds, the skeletons were being moved to a lab at Leiden University, where Waters-Rist was an assistant professor of archaeology at the time.

She said the team did not originally set out to find anomalies in the skeletons but discovered an unusually high prevalence of something called osteochondritis dissecans (OD) in the foot bones.

"After we cleaned up the skeletons and gave them a quick scan, we found that a lot of them had bone chips in their feet," Waters-Rist, currently an associate professor of biological anthropology at Western University in London, Ont., told CBC News.

Waters-Rist said 13 per cent of the skeletons examined in Middenbeemster had OD in the foot bones, yet OD is only seen in less than one per cent of the general population — usually found among athletes, and usually in the elbow, not the feet.

"I've seen thousands of skeletons from all over the world [with OD], they happen, but they're pretty rare," she said.

The researchers point to the farmers' use of clogs as a likely culprit for the high rate.

"[OD] is related to repetitive micro-traumas, using the same part of your body day in, day out," said Waters-Rist.

Much of the trauma was located along the inside edge of the foot from the big toe to the back heel — the area you use to kick a soccer ball — which Waters-Rist said suggests farmers used clogs as a tool to dig, stomp and kick while working.

But don't be too hard on the farmers, because Waters-Rist notes that the clogs may not be the only example in human history of clothing causing health problems.

"If bio-archaeologists stumbled upon our skeletons in 500 years, absent of historical records, we would look so bizarre [to them]. High heels are just an example of that," Waters-Rist said.

The mystery of the 'phantom' citation

Phantom

A 'phantom' research paper that was never actually written was cited more than 400 times by other scientists, sparking a discussion about the importance of accurate academic referencing. (Jakub Krechowicz/Shutterstock )

It was called "The Art of Writing a Scientific Article" and it was cited at least 400 times by other scientists. Yet the original research paper never existed.

The mysterious citation was discovered by Pieter Kroonenberg, a Dutch statistics professor. At first, he thought a colleague had written it. But when he tried to track down the paper he discovered it didn't exist. So how could other scientists be using it in their own research?

Anne-Wil Harzing, who studies issues in academic research, decided to solve the mystery. 

"I just found it intriguing and wanted to get to the bottom of it," Harzing, of Middlesex University in London, told CBC News in an email.

Under the heading "The Mystery of the Phantom Reference" she tells the tale in her blog. It turns out that original paper was completely made up, on purpose, to demonstrate the preferred format for academic citations by a major scientific publisher.

'The most likely explanation is that it was accidental citing that was caused by sloppiness and lack of quality control, not deliberate malpractice.' - Anne-Wil Harzing, Middlesex University 

Yet somehow it ended up in the footnotes of hundreds of other scientific papers in chemistry, sociology, biology and even food science.

Were they cheating?

"Obviously, I cannot know what the motivation of the authors citing the article was," she said. "The most likely explanation is that it was 'accidental' citing that was caused by sloppiness and lack of quality control, not deliberate malpractice."

She thinks the pressure on scientists to "publish or perish" might have contributed to the mistaken citations.

"That said, nearly every academic is under the same pressure, but the vast majority of academics do behave conscientiously and ethically," she said.

"So whilst pressure to publish might contribute to these phenomena, I don't think it excuses them. As always, it is only a small minority that is giving the profession a bad name."

Although it took a couple of days, Harzing said her sleuthing was time well invested.

"I just had to find out what was going on." she said. "In the end, it turned out to be useful as it has sparked another discussion on the importance of proper academic referencing."

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