The Observer Prints Readers’ Editor Non-Apology For #Burzynski Article

What do you think? The readers’ editor on… kind hearts and a cruel illness

The Observer devoted a page to this story a fortnight ago, presenting it as a first-person piece by Billie’s uncle, music writer Luke Bainbridge, although told to another journalist. Yet what was intended as a gripping, human-interest story quickly drew a sustained attack on the paper for apparently offering unquestioning support for a highly controversial cancer treatment, known at antineoplaston therapy.

Dorothy Bishop, professor of developmental neuropsychology at Oxford, wrote to warn that Dr Burzynski’s methods are not recommended by cancer experts in either the UK or the US. “The reason the treatment is available in the US appears to be because ethical regulation is far laxer there than in the UK. Any person who wishes to sell an unproven treatment to patients can do so by describing it as a ‘clinical trial’.”

…Rhys Morgan, a 17-year-old blogger, also received threats after raising concerns about the trials, though his recent claim that the family merely “did some research on the internet” before deciding on the clinic was not based on any conversation with them.

…which says what exactly about the threats to him and others? [Edit to add - hey, considering the standard of some UK journalism - he could have just hacked their phones, right Observer?]

…And this is the point that is being lost in the vitriol that is flying around the internet. Undoubtedly, the Observer was wrong not to have included criticism of the treatment. A simple check with Cancer Research UK would have revealed the depth of concern about it and, no question, that concern should have been in the article, but because it was absent doesn’t mean that the paper was promoting the treatment, as some have suggested (“pimping” it, as one science writer so crudely tweeted).

I’ll leave the last word to the deputy editor. “We had no intention of endorsing or otherwise the treatment that the Bainbridge family have chosen for Billie. The focus of the article was the extraordinary campaign to raise money for the course of action that the family, after careful consideration of the benefits and risks, had decided to pursue. It is a story of courage and generosity involving thousands of people. Of course, it is entirely legitimate to raise issues about the Burzynski clinic as a number of readers have done, and we should have done more to explain the controversy that it has provoked. But some participants in the debate have combined aggression, sanctimony and a disregard for the facts in a way which has predictably caused much distress to the Bainbridge family.”

Yes, as Hayley Stevens has written – ‘When Skepticism Is Off Target’. I agree there. And a disregard for the facts is very bad, after all.

Update – Skeptical Humanities blog: Letter to the FDA about Dr. Burzynski

If you take a look at the public record, Dr. Burzynski has assembled quite a record of getting people to raise enormous amounts of money for desperate causes that usually end in failure. In fact, every single patient that I have found in media coverage of Burzynski for the past 10 years, with a sole exception, is dead.

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About Kylie Sturgess

Kylie Sturgess is a Philosophy teacher, media and psychology student, blogger at Patheos and podcaster at Token Skeptic. She has conducted over a hundred interviews including artists, scientists, politicians and activists, worldwide.
She’s the author of the ‘Curiouser and Curiouser‘ column at the Committee for Skeptical Inquiry website and travels internationally lecturing on feminism, skepticism, and science.

  • http://freethoughtblogs.com/butterfliesandwheels/ Ophelia Benson

    Ohhhhhhhh that’s…ungood.

    • Kylie Sturgess

      It’s shameful journalism. Really awful.

  • ‘Tis Himself, OM

    But some participants in the debate have combined aggression, sanctimony and a disregard for the facts in a way which has predictably caused much distress to the Bainbridge family.”

    They don’t mention the aggression and sanctimony were on the part of Burzynski’s ex-flack, Marc Stephens.

  • http://thinkingisreal.blogspot.com/ Andy

    Seriously, how many prominent (or not-so-prominent) bloggers and tweeters have uttered a single word of condemnation of the family? How many have expressed so much as dismay that the family would take this perceived opportunity for a cure? From what I’ve read – and I’ve read a shed-load of blogs on this – the majority of bloggers have made it clear that they completely understand the family’s actions and those of the people raising funds for them, even if they’d rather such decisions were better informed (through the existence of reliable data and better reporting).

    The target has always been the clinic offering these expensive “treatments” that the family have described as “pioneering”. How did the Observer not notice that these “pioneering” treatments had been on trial for 30 years?

    No sane person expects the parents of a child with terminal cancer to be making entirely rational decisions about everything. That’s why we need governments, regulators AND media to do the rational thinking for them and not to assist the spread of misinformation in the interests of “being nice”.

    For what it’s worth, I hope all the sceptics are wrong and that Burzynski is a genius.

  • http://thinkingisreal.blogspot.com/ Andy

    I will add that we would not need to have these very public debates if the media did its job properly. If The Observer had done the research and warned readers of the myriad issues bloggers highlighted within hours of the story hitting the press, the child’s family would not have found itself mentioned in an internet shit-storm.

    The Observer cannot wash its hands of any additional pain the family has suffered as a result.

    Unfortunately, this not-pology will only result in more public flailing since it seems the editor is still unwilling to expose the clinic to public scrutiny. Their attempt to trash the credibility of Rhys Morgan will no doubt be central to the next round of discussions – and I suspect, at this stage, that the evidence will, again, be more with Morgan than with those who are well-paid to inform.

    Sorry for using your comment facility to vent my spleen. I probably should have blogged.

  • Moggie

    [Edit to add - hey, considering the standard of some UK journalism - he could have just hacked their phones, right Observer?]

    You are aware that the Observer is Sunday sister paper of the Guardian, the paper which broke and has doggedly pursued the “phone hacking” story, right? For all the criticism which can be levelled at the Observer and Guardian (and I agree that their handling of the Burzynski story has been very poor, in line with British press handling of alt-med in general), they can’t be accused of supporting phone hacking.

    • Kylie Sturgess

      “It’s called a joke, Joyce.”

  • grumpyoldfart

    A simple check with Cancer Research UK would have revealed the depth of concern about it and, no question, that concern should have been in the article

    I’m only guessing, but I’ll bet the newspaper did make that “simple check” – and then went the original story anyway.

  • John-Henry Beck

    The paper assisted in misleading those people with the kind hearts in to sending money to a quack. That’s pretty disgraceful. The response is a crappy not-pology? It doesn’t fill me with confidence that they’re prone to researching their articles properly.

    • Kylie Sturgess

      But it’s the right of the people to send in money to whatever they want, even if it doesn’t do what it promises!

  • raymoscow

    In fact, every single patient that I have found in media coverage of Burzynski for the past 10 years, with a sole exception, is dead.

    Even Burzynski’s ‘documentary’ (infomercial) opens with the distraught policeman testifying that his daughter died of, not cancer, but the actual medical cancer treatments that had been used to slow her cancer. These apparently didn’t work very well, so he took her to Burzynski (for, I suppose, plenty of money). Burzynski had supposedly cured her of the actual cancer, but she died anyway.

    Of course, how could a distraught man with no medical training who had just lost his daughter possibly be misled?

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